I went to Richmond, Yorkshire, it’s so beautiful, crystal waterfalls, quaint shops with delicacy from Yorkshire and grassy ruins. We rented a cottage with a clear view of the Norman castle …the stone is yellow ochre and shines in the twilight. Joe and Alex took me to the dales, it was dressed with purple heather and rosebay willowherb. I saw a solitary tree, wind blown and defined and I engaged with this tree, sometimes I feel isolated as nobody knows my combat with MND.
We saw the returning waves of the sea on the east coast in the village of Runswick Bay, which was full of houses with red roofs and a wide sandy beach. We went to Newby Hall near Ripon I love that garden as it has a river through the gardens and it’s so exotic and it has a peace within it. It’s only 90 mins from Manchester and it’s child friendly, as they have boats and a large adventure playground and Zimbabwe sculptures. Sam brought me Downton Hall and we watched it together, it’s a good researched series as it incorporates the social history and it defines the gap between the social class. It was good to have a day with Sam and Joe we went to Saltaire, it’s was a sunny day with a breeze which make the trees bustle we went to the Salt Mill and viewed the Hockney and browsed art books while I smelled, spicy trumpets stargazers liliewhich was abundant every corner of the mill. I am overjoyed that have lived the past 18 months to see Sam get his exams, see him graduated and see him enjoy creative activities. He has been committed to his friends in Manchester and London and they are walking beside him. Joe is set up a business and renovated the studio and he has for confidence, he is a sincere partner, compassionate father and faithful friend.
I haven’t written for a while as I am struggling with MND. It’s take an hour to have a shower and another hour to feed my monster tube. I try to focus on the moment and keep my heart open to appreciate every day but I have been very unstable as my both legs are wasting, they are like poles with no muscle and my hands are like a claws when I flex my fingers they cramp. My consultant said I have weeks or months … That could be two weeks or 12 months !!!! MND is a sword of Damocles, it’s foreboding like a sword in a cover and it’s maybe come out and kill you anytime.
When I walk I get breathless but I can still enjoy the moments, the smells, the fresh air and by family and friends who visit who help with chores.
I need alone time too, to process my thoughts and meditate to rise my mood and reflect on the reality of my life. This illness is so long, while I was functional I managed the speech loss and inability of eating and drinking but my function is going down a dark , grim tunnel . I come out of the tunnel at occasions, we had a indulged evening with massage, nail varnish and henna and fragrant candles. I thought my friends enjoyed it but after I go down the tunnel and it’s deeper and deeper and soon I can’t come back into the air.
So appreciate the life on the surface before you go down the tunnel I am in. Smell and taste the food you eat, take the pleasure of swallowing comforting hot drinks and refreshing cold drinks. When I am a public cafe or restaurant I realise people don’t taste the food they just stuff their food into the mouth as I used to do. Observe the seasonal time notice the vegetables, fruit and trees. When you speak consider your words, speak positivity process your anger, and make people smile. When you exercise, pleasure yourself you can stretch your muscles when you walk and hold your head up and appreciate that you hold objects to look at the beauty.
Living with MND 