Sunday, July 26, 2009
Do I stay or do I go...............
I visited Judi’s blog @ Life as a Hospice Patient last night and read her latest post where she says she is sick of being sick.
I know so well what she means about being sick of being sick.
I am really sick of it!
Everyone with MS or another degenerative disease is sick of it I think.
It is 3 yrs since my MS diagnosis and I have gone from walking and independent to needing help 24/7 and to lying in bed 24/7.
What is very hard to take is that there is no prospect of getting better just progressively getting worse.
Yet every now and then I still do a double take as I realise that even though I am doing my very, very best, I will never get better!
That is not how it is supposed to go; it is supposed to go like this: the doctor does the diagnosis and then prescribes a course of treatment which you follow and get better and better and can then resume your life.
Not with MS and certainly not with Primary Progressive MS, I gathered that from the first day that I knew what was wrong with me.
Saw right a way on the internet that there would not be any treatment because there was no treatment for MS just a variety of drugs to slow down the progress of the disease.
I have known all along that there is no prospect of recovery only getting worse with the only relief that I can let my doctor know when I have had enough.
Then the delightful Dr Wijngaarden will come by and administer a drug that will put me to sleep and then she applies the drug that stops my heart after some minutes.
It is not a pleasant prospect but better than lying here unable to talk, to type and to even see and swallow,
I know about all of this, that is why I have chosen euthanasia but I just can not understand how it can get to me big time, time and again that I am so very upset that I will not get better.
Took me some time to work out that there was no hope of recovery, the big trick is to keep hope alive while knowing there is no hope of recovery.
Maybe it is because we have grown up believing that the doctor will make you better and this time they can't do that.
Took m e some time to work this out had not thought of this aspect but of course that is what I have found so disconcerting from the start when it became all too obvious that I/ we were on our own with the diagnosis.
I wonder of you recognise that too?
I try to make the best of the good that is in my life like my darling Richie and friends and still being able to be here and now.
As long as I can communicate, can talk, write and read and I can eat and drink, I can put up with the pain as I am still getting the what I need to live.
It is reassuring to know that in The Netherlands I can chose the moment when I have had enough, unlike people in England who can not say, this is enough now and who will be kept alive no matter what.
Even though it is not life as we have known it unless you think that not being able to talk, speak, see or swallow would qualify as life as you know it.
I do not think that lying in bed not being able to participate in the life around me or in my community would qualify as life for me.
Don’t understand why there is so much negativity towards giving people the right to self determination over their own lives.
In England the Moral Majority keep banging on about helpless people being forced to accept euthanasia and refusing to look at the real heart of the question which is people deciding when they have suffered enough and wanting to exit.
It is a question of a life of pain with no prospect of any improvement and not what they, the ‘Guardians’ like to pretend it is about; they like to propagate this myth that to pass a law allowing Euthanasia would put handicapped people at risk of being euthanised.
In England they practise Euthanasia by the back door, they will increase the dosages of pain relief such as morphine to such a level that you are kept in a sort of coma.
Then steadily increase the dosage so the person slips from coma into death, this is what they call palliative care.
Anything but allow people the right to decide when they have had enough pain and do not wish to live totally dependent, hooked up to machines to keep you alive and totally incapable of taking part in life.
I personally can not think of a worse way to end my life then totally out of it on opiates attached to a machine the does my breathing for me and another that feeds me intravenously.
That would not be what I would like to happen to me, everyone has the right to decide for themselves.
Shame that there is no real debate on the subject instead of just using the red herring of people being forced to request euthanasia.
As far as I can see the current method of euthanasia is via the backdoor of palliative care.
‘’Euthanasia is popularly taken to mean any form of termination of life by a doctor.
The definition under Dutch law, however, is narrower.
It means the termination of life by a doctor at the express wish of a patient.
The request to the doctor must be voluntary, explicit and carefully considered and it must have been made repeatedly.
Moreover, the patient's suffering must be unbearable and without any prospect of improvement.
Pain relief administered by a doctor may shorten a patient's life.
As is the case in other countries, this is seen as a normal medical decision in terminal care and not as euthanasia."
This is from Euthanasia in Holland
I am glad I live in The Netherlands where I have the choice to make use of the law on euthanasia.
Would it not be a more honest world if people could decide for themselves how long they wish to live with consuming pain, if they are suffering from a degenerative or terminal disease.
Let us look behind the governmental smoke screen and demand a discusion and a change in the law now for a more people orientated approach.
It is a very pleasant afternoon here which I intend to enjoy hope you do too.
A traditional New Orleans Jazz Funeral for the late tuba player Kerwin James. He died in Oct. 2007. Alot of viewers have been asking whats the reason for rocking the casket, it's so he can dance one last time. I also have a Mardi Gras Black Indian Funeral video on here too. I must WARN you it is'nt your "typical" funeral. For more videos, pics and New Orleans unique culture check out