Monday . . . Night before last I dreamed of my photographic catalogue, I was struggling to make choices and experienced a panic attack. I was buried alive. Could not move. My mind would not calm however hard I tried. Motor Neuron Disease. Merde!
In times gone by with panic attacks it was easy. Out of bed and wrote it down. Ten minutes or two hours. Panic gone. Back to bed and deep clean sleep. Today I wake muy lover from her sleep, merde!
Another challenge. Daylight saving :-) nature interrupted.
Tuesday . . . A glorious day. Birds sang me awake. Sun created natural art on the bedroom wall. My legs feel shot. My hands as well. Sitting outside about all I can do is meditate.
Back In Side. Working on my photography. Lunch time and a conference with my health care team. Bob, a senior administrator joined us and his whole attitude impressed me no end. Time will tell.
Friday and I am sitting with the murmuring sounds of the dishwasher :-)
Wednesday. We finally made it to the Wellington MND meeting. It was so good. Just to be there. Friends and fellow travelers. Support team. Then an exploration of Whitman’s Valley, coffee sandwich and onto Masterton visiting friend Eric in bed from a stroke and for another X-ray for muy Emily. A long day of driving. Tiring.
Thursday. I paid the price for Wednesday :-)
Try counting the leaves on a tree a bush a vine a plant. Everyone an individual life. Everyone different. Life. Try relating embracing studying observing. God is in the details. Mary Oliver an inspiration.
A breeze. Cool. Steady. Affirming. Tea towels drying in the sun dance silently to the chords of moving air. Trees sing. Leaves rustle. Harmonious. Garden filled with flowers. Shades of yellow. Red stalks of spinach. Cream arugula flowers. Blue borage. Purple hebe. Pink and white cyclamen. New season strawberry flowers. Soft green buds bursting on the grape vine. Spring is in the air. I Sit in our environment and smile. Nature. My Nurturer.
8:58 PM … finished reading Walter Moseley’s Little Green. A great yarn by a great writer of the black experience in LA. Easy Rawlins. A beautiful character.
Saturday. A day to sit outside and soak in the suns rays. Bliss. Amazing weather. Clear hot delight. My body soaks life as my mind becomes poetic.
Leap forward to Wednesday. Last night. 9 PM. I prepared for bed, I fell. Flat on my back from a standing position. My head hit hard. My back and right ankle took a clobbering. Today? I can do nothing but type with one finger slowly. Can’t lift my arms. I feel concussed. Thank god for our friend Will who came on muy Emily’s call. He lifted my non functioning body. Into bed. Merde! Thank god to my spiritual tools. Being in acceptance. Being willing and able to surrender to a power far greater than myself.
Muy Emily, you are my guardian angel.
My carers and friends I thank and salute you.
Bureaucrats are the problem. So many layers. Dithering blithering idiots. I cannot get back the time they steal from muy Emily and me. Simple. We can do but what we can. For two years they have dithered and lied. Time I cannot retrieve.
So! End of the day. Peaceful. Quiet. A day of recovery and taking it slow. One tiny step at a time. Hard for me. A day of sort of doing nothing. I need to view it as a gift. Gratitude.
Wednesday. Cold wet. A good nights sleep. The hands of recovery with MND are somewhat tied. After a fall recovery is not normal. The body is in shock. The energy has been drained from my body. Never to return. Degeneration.
Thursday. Tried a new laxative last night. It worked. Not quite how and where we wanted though. I have experienced irritable bowel syndrome my whole life. Not nice. I feel like a new born baby.
Friday. Challenging times. Bipap keeps getting shut off and I am left gasping for air. We need some serious foolproof wiring and carers need to pay serious attention. Because we bought our own chair the DHB will not help. It has happened many times this last few weeks. From Power outages to simple wiring mistakes. It is taking a huge toll on my mind and body. I am starting to wonder. What’s the point? Merde!