Day 6 – The symptoms unraveling
This is one of the bad days as the symptoms seemed to be unfolding today to test me in my coping skills. I failed, I tried to ignore the, though meditation, distraction and sleep but they seemed stronger then me today . I know like the the fronds of a fern the symptoms will unfurl and display the many colours and I have no control. I was going to visit a friend but instead I went to bed and felt sorry for myself , thats ok i think for a while but not foe too long. i challenged myself them and texted a friend for help though and Chris came with medicine, flowers and distraction in the form of a trip to the cinema. We went to see what we thought was a light comedy by Richard Curtis but it was really sad and we both wept at the end …. I won’t tell you the story as I have made that mistake before ! Later on Joe came around to chill with me and we didn’t need to speak a lot it was just comfortable arching TV and playing scrabble .
On reflection of the day none of it was planned in fact is was very unplanned day , I relinquished control and by the end the day I was very comfortable in my skin again . We never know what is going to unfold in our day as we wake up, it’s fate, we think we have control and although some people stay in the comfort of normality and routines as they think they have control to stay safe.
If I had stuck to my comfortable bed I would have just stayed in a miserable mood , comfort patterns for me if not asking for help and isolating myself. I am pleased thatI broke out of the comfortable world and took a risk and I must continue to do this even though my symptoms are going to get more debilitating. In two weeks Ruth and I are going to the Isle of Harris in a VW van for a week , I could stay with the comfortable life and say no to potential cold nights, breakdown VW vans in a remote place and extensive driving but I have to live this life.
I read someone experience with MND today who had ALS which affects the legs and hands first. Although the life span is longer with ALS type, I have the ability to holiday and have function in my limbs still and so I can still make the most of the travel and independence. I am grateful for that so I must make the most of the function I have and not focus on the unfolding symptoms as I long as I live I will have some function even it is only the ability to complain !!! So watch out my friends I might make the most of that !!