My story of living with Multiple Systems Atrophy (MSA). Through this blog I want to raise the profile of MSA and share experiences with others. My aim is to create a record of what it is like living with this disease mainly through photographic images.
Friday, 1 February 2013
Can you be busy and hibernate? I don’t think so but I feel as if I have been doing just that. It’s certainly lovely to wake up to a white world and silence and there were a couple of mornings in January when it was exactly like that. Keeping warm is a problem in my draughty chapel so I’m so pleased to see the lighter evenings which bring the promise of new life as the bulbs spring up in the garden.
My white garden on Monday 21 January
There have been lots of moments of sadness in 2013 so far and I haven’t felt like adding anything to the blog. Several things have triggered the sadness. Here are just a couple of the triggers. I changed my internet provider and all the emails disappeared from Simon’s computer as did his address book. In some respects it was not a bad thing as the emails addressed to him have stopped coming but there were messages I’d kept because of what they contained – special memories of him from several work colleagues and friends received after he died. I should have printed them out or saved them in a folder but hadn’t got round to it. Then last week I noticed that the emerald in the ring Simon bought me soon after we were married had fallen out when I was wearing it. I probably lost it when I was sorting out toys before the mum/baby/toddler group I help with on Friday afternoon. The ring was made by the husband of one of Simon’s art college friends and we both loved it. But i tell myself it is only a thing and not important in the great scheme of things. As a visiting African teacher said, ‘At the end of the day if I’m alive and well and have eaten then I’m happy’.
The sheep know how to get their lunch
Just listening to a special CD called ‘Voices of Promise’ made in 1999. It came out of a competition made possible by Marks and Spencer and the reason I bought it was because one of the tracks was composed and recorded by a girl I used to teach. A talented musician and singer, Jenny wrote about ‘The Guiding Hand of Tomorrow’ and I like to think she was inspired to some extent by my geography lessons. I loved teaching so I always enjoy going into schools and running workshops. This week I was in a small school in Hampsthwaite, a small village not far from Harrogate. They are just beginning their journey towards becoming a Fairtrade School and the children and teachers were a delight to work with. I took my six foot inflatable Fairtrade banana which is always a firm favourite with primary school children. Now I’m looking forward to the visit to Skipton of a Palestinian Fairtrade olive farmer and a representative from Zaytoun, a community interest company founded in 2004 to create and develop a UK market for artisan Palestinian produce. Simon always teased me and called me Mrs Fairtrade. I miss him.