Posts

All quiet, kind of.....

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I have been very quiet for a few weeks as things have gotten hectically busy recently.
After A LOT of searching and many trials and tribulations, I landed a great job - 25 hours a week and utilizing my knowledge and experience in the performing arts sector. I am not saying where or what it is exactly but it doesn't pay badly, I am a manager and the other people I work with are really great and very supportive. Sometimes good things happen too….
I also went for my yearly appointment with the Neurologist. There was a new intern this year and he proceeded to examine me and ask how things were. Well, great actually considering that the medical profession has not come up with ANY treatment plan for me ever. To my shock and horror he said that I am eligible for a trial run of Ocrelizumab,shock as I did not think that I would be eligible and horror as the drug (which is not yet available in NZ) will cost - wait for it - $NZ67 000.00 for a single 6-month transfusion. I decided that as I canno…

Thaw, the god of defrosting.....

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The headline on the online news feed that I subscribe to announced tonight: - Trump says US mulling 'very severe' response to North Korea missile test - somehow I don't think that that means that he is going to put on a frowny face, or threaten to hold his breath……..oh well lets enjoy it all while we can. The sunset tonight was very pretty…
Here in NZ the seasons are evidently on the cusp of changing. A week or so back we passed mid-winter and in theory that means that we are now heading towards spring/summer/hot weather. There was thick frost on the roofs a few days back and the temperature hovers around 5 deg C at midday, however the bright sun during the day prompts the insane locals to go out in shorts and tee shirts while I wear a beanie, scarf and thick parka…..I am a happy wimp when it comes to (not) braving the weather.But evidently it will defrost and get warmer, and I live for that because boy, am I ever battling at the moment!
My experiences of finding work and mak…

Winter games.....

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So. I have been chastised by my wife (Sarah) about my frequent and voluble use of English language swear-words. I tend to NOT be very happy about the various situations I find myself in - thanks to ms - and tend to pepper my speech with invective describing my situation at the time, whether that is alluding to something happening to me or complaining about bouncing off the floor - again. Unfortunately we also have a 7-year-old son who joyfully copies a lot of what I say, so after nervously trying to dissuade him from telling people to bugger off (…”whatever you do…DON’T tell your mother daddy said that!”) I now make a conscious effort to swear in other languages that most others around me (hopefully) won't understand. I lived and worked in both France and Italy for about 10 years and speak passable French but pretty fluent (colloquial) Italian. So now my son has been heard to porca-miseria happily. 2 minutes on Google would allow anyone to find out just what he is saying but for the…

20 000 feet....

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Recently another ms sufferer (is there please a better noun to describe us??) posted a quotation on fb that made me sit-up and do an instant double take. It wasn't about winning or being nice to cats or saving whales or remembering people with cancer, it was this:
Because if I tell the story, I control the version. Because if I tell the story, I can make you laugh, and I would rather have you laugh at me than feel sorry for me. Because if I tell the story, it doesn't hurt as much. Because if I tell the story, I can get on with it.” Nora Ephron, Heartburn
Yes  I have been battling for ages to say something coming even remotely close to this in its very apt and complete insightfulness. I admit with utter shame that I did not know who Nora Ephron was before reading this quote but now I have read some small amount of what she authored and I am utterly taken by the prodigious talent that this person had, (yes had - as she is now dead from complications arising from leukaemia). But I re…

Hibernation.....

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You will find that I write about the weather a lot as the weather plays an enormous part in the life of anyone with ms. A very large percentage of ms sufferers suffer terribly in warm weather, and only start to find relief from pain and spasticity when it becomes colder.  I am not one of them. A smaller percentage of ms sufferers are the exact opposite, and their muscles only unclench in warm weather relieving pain and making mobility much much easier - plus, warm weather generally improves life’s outlook and its aspect. This is me. We lived in Qatar in the middle-east for 3 years during which time my ms symptoms stayed pretty consistent given that the weather never really became anything less than absolutely scorchingly hot. When we came to NZ and its colder climate, I went rapidly down hill until I needed a rollator almost constantly and getting to the shops or Dr only 500m away was similar in planing and effort in getting a manned mission to Mars. New Zealand has a ‘temperate’ climate, e…

Huh..who...?

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Yesterday, Sarah came home in the spluttering rain and announced that Donna was coming round later. Huh?? Donna....
a colleague from work maybe or a relative that I don't know/forgotten about perhaps? This is more than possible as they seem to pop in and out of our universe unannounced so maybe...
No.
Donna is yet ANOTHER cyclone! evidently a beeeg one at that. So. This evening I am listening to the wind trying to lift up the roof and throw cars around in the street..........nah not really quite that dramatic.. It is raining and blowing pretty hard but probably won't amount to much. By the time that tropical cyclones get to us down here they seem to have dissipated somewhat. Having said that, I had to take my son to school yesterday on my golf-cart. When I started to come back home the rain came down and although I have a heavy-weather rain jacket with a serious hood, after 20m I had to stop as the rain was horizontal and I couldn't see anymore.
When I thought about gettin…

All a sparkle...

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The Photo that follows was taken by my wife - Sarah - (not her real name..) at her workplace this morning. Wellington harbour. 5th of May 2017 at around 11:00. Not a cloud in the sky, placid clear harbour waters and long shadows mask the icy icy cold temperature today. About 3 deg Centigrade. Those of you from Canada will laugh at that temperature as you get real professional-grade cold weather there not this excuse for cold weather. But there was frost around this morning and when the wind drifts by best you have a warm jacket and beanie on...
The photo LOOKS great and it reminds me of probably what I look like too; ok'ish. Last week I had a rabid flu that finally took antibiotics to defeat it and one night I woke up unable to breathe at all. It was only after severely thrashing around in a panic that I managed to gasp in air. The next day someone called me and had to ask to speak to me while I battled to convince them that it was in fact me talking - or trying to talk. Anyway. Mu…