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


Richie said...

You choose. Only way that it can be decided. I will support you in all the choices of your life. It must be beautiful to be you so I am sure you will want to keep hanging around as long as possible. I will love you every day we have together.

suejan said...

I read all your blogs-you are a good writer.Meant to comment before but been so busy. It'sv.cold today. Ienvy you your Richie-I'll neverhave now.Can't believe you have had MS such a short time. I am 38 years now,got worse but seems part of me As soon as I was diagnosed and of course 1st child autistic he went to Australia-no contact and I had to bring up all 3 children myself. You cope so well

Diane J Standiford said...

You have a great attitude. You are right too, there is no way out of MS. My hope for you is that you can continue to find beauty wherever you can, continue receiving the love of Rich, know there is a better life around the corner in the universe, and medical science is working hard to help you. You are a gift from God (whatever God you believe in) to the rest of us, an opportunity to help us become better people---your sacrifice gives us in grace and that being the case you are in fact an angel on Earth. Rich and the rest of us are very lucky to have known you. Thank you.

Stephany said...

Hi Herrad and Richie,

When I found your blog via Spike and Marleen's (looks funny to write that, doggie blogs)I understood you had MS, and was captured by the love you both shared for each other here. Over time, you have written honestly about having MS and the indignities, and at times I would sign off of here feeling sad, knowing one day Herrad won't be here.

Reading this post, was hard but I thank you for keeping the awareness of the reality here, a blend of hope and a dose of real life...and you will indeed help others with the choice to live or die with the grace we all have learned to love, Herrad.

I also cried when I first read this post this morning, then had to come back to write this. I wondered what I would do to come here and find you were gone, that is a brutal truth that you share with us out in this world of blogging.

Thanks to you both for letting us be a part.

I also agree with Richie's comment.


awb said...

We have the same problem in the US, people making those decisions for us. Here euthanasia is illegal too, so when the time comes they backdoor it by disconnecting the feeding tube.

I admire that you have taken the steps needed to handle this, I hope I can show the same courage when it's my time to decide.


Stephany said...

i also wanted to say that i will be happy to say i knew you even if not in person.

JC said...

It's been an honor to meet you. I have had a bit of 'pain' in my life and thus, I can imagine what it's like for you.

You will know when it's the right time.

I will miss your witty blog but will remember how special you are.

May today be a peaceful one for you,

Stan said...

Dear Herrad:

Whether we realize it or not; we each will knock upon and open door to another realm.

You live each day as it comes and make the very best of a certifiable unpleasant situation.

This will be always be the Herrad I will remember with treasured respect and great fondness.

I have to believe you will know in your heart of hearts when its your time, and you rightfully deserve to make those decisions for yourself.

For now I can only hope and pray you savor each day with great joy. That you feel the breath of summer winds, and the rays of sunshine cast upon your skin by mother nature's abundance.

Life this gift was never meant to be permanent; but a journey to a rightful conclusion for all.

You of all people live with this poignant reality each and every day; and yet you live on bravely and fully singing out into destiny's solemn face.

That, in my opinion is living life to its fullest; whether limited in scope of movement and senses or not.

The silver lining and golden rainbow in this journey is in knowing you have so many that care, love, and share your journey with you. Those shining jewels do live on beyond our feeble measure of time and breath.

Hope you have a great and joy filled day.

Your Pal,

Bobrobert said...

Herrad - Listen. I don't do "bumper sticker" comments. :-) Your post has upset me greatly. Although I'm very happy that you have the choice to decide when you are sick of being sick, it reminded me that I do not and will not have the right to make that decision. I have to wait for some even more very painful progression to end it for my family and me.

It is a very hot sunny day here in Texas; I wish it were cold and overcast.

steve said...

I had the honor of second lining the Jazz Funeral of Tuba Fats. He passed away a week before I left Louisiana for a job in California.

That's the way I want to be remembered. Put me in a casket and have a big party all around me. At the end, put me on a funeral pyre made out of the party rubbish.

Denver Refashionista said...

I am sick of being sick but you remind me that it could be much, much worse.

I totally get what you are saying about euthanasia. I am glad you have that choice. I also agree that life is still worth living if you have your cognitive functions. I understand not wanting to live without them. I don't want to either but euthanasia is not legal here.

I am glad you have Richie's love and support. I hope I will have my husband's too if it comes to it...

Kelli said...

I feel so fortunate to have found your blog when I decided to try blogging myself. You are an inspiration to me. The love you and Richie share is truly beautiful. You are fortunate to live in the Netherlands where euthanasia is legal. It isn't in the USA. I agree with your decision and believe everyone should have the right of choice. You bring much joy to so many. Thank you!

Herrad said...
This comment has been removed by the author.
Herrad said...

Hi Richie,
Thanks for your love and support, I wanted to get very old with you but my ms has decided oherwise.
I still want to be around for as long a possible with you my beautiful darling.

Hi SueJan,
Thanks for your comment I will come by your blog soon.

Hi Diane,
Thanks for your sweet words.

Hi Stephany,
Thanks for your comment It is not an easy situation is it.
Very happy to know you

Hi Andy,
Thanks for your comment I am sure you will show all the courage and dignity you show now.

Hi JC,
Thanks for your comment I have had a peaceful day hope you did too.

Hi Stan,
Lovely seeing your comment thanks you are right the gold nd silve lining are you and all the people I know and love.

Hi BobRobert,
Thanks for your comment, fogot about comments when i wrote it.
Really gutted about you not having the choice really hate that.

Hi Steve,
Thanks for your comment, what is s econd lining/
I agree with you that is the sort of funeral I want too with the pyre at the end.

Hi Nadja,
Thanks for your comment,sure your husband will be there for you too.

Hi Kelli,
Thanks for your sweet comment, the idea of bringing joy to people is nice.

Thanks for all your loving comment they had me howling, had to get Richie cleaning my glasses three times since I started reading your comments..
I hate thinking about not being here and being with Richie and blogging with you all really hate it.
The only way I cope is to not focus on what will happen as I have no control over it so better not to think of it.
Did not mean to write about this today but did as I guess it has been on my mind for awhile.
Just was not prepared for your comments, think I may have stopped howling now.
Have a good begininng of the week tomorrow.

steve said...

Second Liners follow and surround the main line band and social club. Anybody is welcome to join the parade, dance, and celebrate as a member of the second line.

Dancing in front of the stage in certain New Orleans Jazz clubs is also considered second lining.

Don't upset yourself darlin'. You've got way to much kick in you, even if it is not as controlled as you would like. You can second line with your hair, your smile, and yes sometimes your tears.

Recommended authentic New Orleans Brass Band Jazz: Bob French and his Original Tuxedo Jazz Band

Libby said...

herrad, i love everything you write, but hate that your life will come down to a decision and not happen naturally or by some random 'accident' or anything! at least it will be your decision, & that'll be it! i still loved your videos on here! funny that i see more of the world through your great blog while i'm sitting on my butt here??

Celeste Maia said...

As Richie so well put it "you choose", Herrad, and there is some comfort in that. For the rest of us we do not have that choice. These righteous countries feel that only God gets to choose, not us. I dont understand why cant they be like The Netherlands, is it because it is a negation of theology?
Stephanie wrote what I feel " come here and find you were gone", that will be very hard for me too.

Herrad said...

Hi Steve,
Thanks for clearing up the second liner mystery for me.
Thanks for the link to Bob French will enjoy it shortly after my physio has been.

Second lining sounds like following the various bands on their trucks at Carnival in Trinidad and Notting Hill Gate, London.

Hi Libby,
Thanks for coming by, it is a strange thought that I can decide but I am glad I can.

Hi Celeste Maia,
There is comfort knowing I can choose, hate that not everyone has that choice.
I think they should have the choice, it should be there for everyone.

Thanks for coming by, it was a difficult topic but I had to write about it, it was harder once I had written it and saw everyones comments.
Hope you have a good day today.

Aviva said...

I admire the way you find so much beauty in life, and the small pleasures.

I'm happy to live in Oregon, where voters have at least twice now approved physician-assisted suicide (aka Death With Dignity Act). Unfortunately, the "assistance" is only in the form of prescribing drugs that the person has to still be able to swallow on his/her own. And there's a whole bunch of criteria one has to meet to qualify.

I'm glad you live in a place where you can make that choice. But I'm also glad you're not making it yet.

Herrad said...

Hi Aviva,
Thanks for coming by and leaving a comment, it is really nice hearing from you.
Hope you are doing well.

Amrita said...

Dearest Herrad, I reach out to you in love. I am so pained to read this , I have suffered a lot of pain and have denerative eye and ear diseases, so I can empathize with you.I am a single, physically challenged woman living in male dominated , problem ridden India. I have to fend for myself.
No support from the government or anywhere. We live on my mother 's widow pension.
But I am Christian and that gives me hope and strength to carry on.Without my faith I would be ready to jump off the bridge right into the River Ganga.

I read your older posts. You 've had a very difficult life and experiences. Whether you believe it or not God has been with you.
He loves you, although we may feel He has betrayed us. I 've had a lot of anger against God.

Take courage Herrad, God is merciful He will not let you suffer more than you can endure.

Test Him and see. He will answer.

My computer like the helpdesk is very slow too, I have a slow dial up connection also.

I will come back and watch the videos.
I love jazz.

Herrad said...

Hi Amrita,
Thank you for coming by and leaving a comment it is much appreciated.

I do not share your beliefs but we do share in so many other ways.
We are part of humanity and it is good to reach out and connect with each other.

We get our strength and hope from different sources, hope we can concentrate on what we have in common.
Look forward to hearing from you when you have the time.
Hope you had a very good day, (think it is night now for you?)

Travelogue for the Universe said...

I am chiming in late.Your arguments and rationale for euthanasia are all sound.Your days are difficult and I am sorry you have such pain and dependency.My beliefs at present do not allow euthanasia except for extreme pain or cognitive losses, and then again...I don't really know.I also believe everyone should decide for themselves with sensible guidelines like you have described.I also believe that when your know you have a way out, each day may look brighter by illuminating all you are blessed with.I wish you peace and comfort.

Amelia said...

It has taken me a while to find this post and even longer to read it.
You have been such an inspiration to me and to countless others in the blogging world. I really can't imagine you not being on here, giving us a dose of reality every now and then.
The only comfort in all of this is that you will have the choice to say enough is enough. That you can go out your way and with Richie by your side as you want it to be.

I have never met you and that is my only regret but I am proud to say that I know you and have received so much comfort and support from you, that will always make me smile.
Love you lots and look forward to many more posts from you yet.