I spent most of my working-life pre-ms, in live entertainment and events and the working hours were very abnormal, so now in-spite of ms, or perhaps because of it I still find myself getting up after everyone has gone to bed and staying up until 4 or 5 in the morning (not every night…)
So, at 01:30 I am listening to John Coltrane and Miles Davis in the headphones while I write this and the icy rain is persistently lashing the quiet street outside…

So, you may have noticed that this is a new blog-platform and a new format to my blogs. When I started out blogging, it was 100% due to an idea from Suburban co-working here in Wellington, who were mentoring me at the time. I was their student and the whole mentoring-thing was a brand new idea, a bit of an experiment too. The idea behind the blogging was in order to help sell my range of jewellery - tākiri  - and get moving my idea for creating a social-enterprise involving other disabled people. Well the jewellery and momentum for creating a social-enterprise are still there (albeit refined), but what I hadn't counted on at all, was what the blog would do for me. 
At first, it was fairly monotonous and a bit of a drag trying to come up with something to write about but after about a month or so I suddenly found that I was looking forward to writing and what WAS now a drag was coming up with interesting snippets concerning the jewellery………. Writing about my own circumstances and condition has become easier and easier. 
It is cathartic and therapeutic to say the least!
The practical reason for switching platforms is better control over the blog and to seperate tākiri the jewellery from my own ms journey, the 2 are intertwined but will be both better served by being without the demands of each other..

A few years back I read another blog written by ANOTHER ms sufferer who was explaining how ms offered them the chance of rebirth and all the benefits that came with having ms. I didn't finish the page as I began to spew venom at the author…….At the time I felt like ordering an air-strike on this person……..not walking properly is somehow a benefit????? GET REAL!!

now I understand what they were trying to put across..

Having this disease DOES offer an unexpected albeit somewhat perverted ‘rebirth’ opportunity although I still have trouble with using ‘benefit’ within the context of having ms. It is a very bumpy ride and one that I had hoped I wouldn't have to go through but here we are. I have to constantly relearn how to do the simplest of tasks (how many cups and plates have I actually chipped??) and also how to approach all sorts of organisations for various means of support. My family and I have had to reinvent how to have a life as a family and that on its own is something that I will go into in-depth in another post as it is not well covered at all by health-care professionals and it is an area that affects us as ms sufferers very very deeply and deserves some depth. I say this as while we as a family were experiencing great darkness in our relationships there were few resources available to help and very very few people actually understood what it all entailed. Life goes on.

"A luta continua, vitória é certa"
(The struggle continues, but victory is a certainty.....)


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