Panic Attack New Years Eve, Merde!
What is going on. MND, I am so over it. It is the most challenging time of my life. My reality today.
This past week on Morphine has not been at all pretty. And here I sit. The cusp of 2014.
Where do I go. What can I say but HELP! I need help. Do I sleep in my chair or where I want to be, in my bed. I have spent three nights in my chair. Is this how I want 2014 to start. Or do I Accept my FEAR and turn it into FAITH! Help!
And then I began breathing slowly and like a mantra I began reciting all my friends names. From all round the World. My anxiety reduced. God is a verb. I took action. I was not passive. My friends are my Higher Power tonight.
I slept well in my chair last night. It was very cold. But I made it. As I lay back, as the day dawned, as the first rays of God’s Sun settled on the grape vine I planted a couple of years ago I observed Bunches of grapes hang, waiting to ripen. This year I’m hoping we beat the birds. I ate breakfast as usual. Vegemite on thin crisp toast with butter. An hour later I felt hungry and Muy Emily cooked mushrooms. Fifteen minutes as I began writing this piece my stomach exploded. All day it has been erupting. I am totally wiped as is my bum. I spent time in the sun and felt great. Then an eruption and a lost race to the bathroom. Merde! And just now I totally freaked out as I read the New York Times on my iPad. I glanced at my fingers. They are dying. No hair. Nails. Skin tight and shiny. My hands! My paranoia!
I was going to write something totally different today. My . . .
Whew! MND patients really do need 24/7 care. Panic day. Carer gone, muy Emily in Wellie. Can’t pee. Bottle not reachable. Bugger. Challenging night. Dreams of Native Americans. Learning to walk in others shoes. Being available for and caring for others. Life Lessons. Need to pass it on.
I would like to write something positive today, rather than ‘oh poor me’ except that I am in an ‘ oh poor me’ space right now. Not eating has me tired to the point of lethargy. Lethargy adds to my sense of despair. Time to change diet to less solids. Puréed time. Soup time. Back to baby days. I need my strength. More protein liquids needed. Funny how life is a circle aka cycle. We start by depending on others for everything. We finish the same as we begin it seems to me. Makes me smile. Can’t be all bad can it? Not at all easy for others. I can see how certain, many? mothers would find it all too much. Frustration leads to anger. The child pays the price. Society pays a huge price.
Ah fuck! Oh Poo Me :) Shat my pants while in PWC! Waiting on carers.
Stormy and wild weather today. Beautiful looking out rear window. Sunlight competing with dark hammering rain and wild blustery wind gusts. My carer arrived, managed to get me on the Loo and found I had not pooped, mmmm! Paranoia?
After that experience I settled down. Cricket. Tennis. Food intake better than the last. I need my strength or I spiral down, depression kicks in and, ready to call it quits. Then the Sun comes out :)
Which brings me to the next step. When to go how to go. Muy Emily and I enjoyed an honest discussion on this today. We are in agreement. So . . . I did some web research. A toughie. It’s illegal in New Zealand. I am not committing suicide, I simply wish to die with dignity. I am buried alive in my own dying body. It’s that simple. I do not wish to be a vegetable kept alive by machines and nurses. And I do not need religion to tell me I am wrong. As a dear friend shared, it’s my choice.
Sun day. Finally the Sun. What a day. Wrote to family and friends. Shared yesterday’s thoughts.
Now, mid afternoon my spirits lifted in relation to the morning experience. Sat in the sun and quietly meditated.
Take me right now, please. A glorious summers day. I am done with MND and the Health ‘Care’ system. There is no Hospice in the Wairarapa who will take me. The DHB will not support me in a Wellington Hospice who understand and serve MND patients. I am over 65 so the NZ Systems cuts funding. There is no relief. My body is totally out of whack. Hardly a cloud in the sky. Birds singing. And I cannot relate. What do I write? Nothing of any consequence. Can’t find the energy. It’s gone. Can’t work on my photographs. Bugger.
A blanket of grey cloud covers the hills and flats. It’s cold. I am bundled. Trying to write. Can’t do it. Beat.
Time to email Frank. A friend with MND. And did.
Another friend with MND died this week.
My oldest Australian friend is recovering from triple bypass.
Tough times. I continue to breath. Gratitude.
Life on Life’s Terms. The three C’s of Al-Anon FG’s . . . I did not cause it, I cannot control it, I cannot cure it!
“K here. Don’t know if you saw this on the Forum … but sorry to say, but Tom died “unexpectedly” in his sleep early Sunday morning. Unexpectedly, in that there had been no sudden turn for the worse, and even the hospice folks thought he was pretty stable at the moment. It was a such a sad surprise to wake up Sunday morning to find he’d gone; but really, it was the way he always hoped the end wold be. Suddenly, quickly, with no agonizing days-long dying process that would put everyone through the wringer.
But why I’m really writing is to find out how you’re doing. You’ve been struggling so much recently, and I’m wondering if things are settling down a little for you.
Sending tender and caring thoughts your way.
A Challenging Disease!