The C word

I don’t mind swearing. Some wonderful recent films have been loaded with fabulous swear words. If you haven’t seen ‘In the Loop’ or ‘In Bruges’ I strongly recommend both. Of course, you should avoid them if you have a problem with ‘bad’ language.

‘In Bruges’ is a particular favourite. Having already watched it at the cinema, I saw it on dvd when I was in hospital in 2009. My brother had lent me his portable dvd player. There was not a lot to do on neurology having just been diagnosed. Every so often doctors of all different levels would come to practise on me. Supposedly I was a particularly interesting case. I had just finished watching the film when one doctor came to ask me some cognition testing questions. You know the sort of thing.

What’s your name? What do an orange and an apple have in common? What’s the difference between a dwarf and a child? Hmmm, if you have seen ‘In Bruges’ you will understand how this last one led me into a rambling explanation as to why that is such an interesting question. It culminated in me recognising that the doctor probably didn’t want to hear about hit men in Belgium. My cognition was good enough to be able to give a more straightforward answer to do with people of restricted growth and young human beings.

I recently watched it again. MyMan hadn't seen it and I so wanted him to like it. Thankfully, he did. The film ends with mention of one word I definitely try not to use. Can you spot it here: 'In Bruges' last lines. It is still more than two months away but already it’s hard to avoid Christmas. Whoops! I used the C word.

In shops there are Christmas lights, Christmas cards, Christmas puddings. On TV there are Christmas ads. In households there are Christmas debates. The ones about who is going where and when. I have been spared most of these in recent years. Now I am laying low whilst MyMan debates and fumes about where his children will be on which day this Christmas and New Year. I will go along with whatever is agreed with his ex. I am avoiding use of a different C word.

Living in the present

I’m not a great one for posting inspirational/wise thoughts on Facebook but this picture was shared by a friend. It caught my eye and made me think:

I don’t want to die having never really lived. I am determined to enjoy my life no matter what it throws at me. I sometimes do things other people might think are a bit mad. I have been up in a hot air balloon, jumped out of an airplane in a fundraising tandem skydive, had a trial gliding lesson, been on a segway.

Apart from the hot air balloon ride, which was a birthday present from my BFF, all these have happened since DX. Sometimes it seems that MS has been a life sentence but also a gift. 

I think my next madness may be abseiling down the side of the hospital to raise money for the neurology department. I would never even consider doing that if it hadn’t been for this gift. That is living in the present.

Patterns in the sand

I have regular pattern in my life where there was none before. Meds at 8am, 2pm and 8pm. And irregular pattern but pattern nonetheless. Hospital visits with their accompanying blood tests. Drink lots of water, warm up your arms, chat to the nurse to distract your veins so they don’t notice the needle coming to suck out the blood. A week later I still sport a large dark bruise on one arm from the first, failed, attempt to get blood out of me during a clinic visit.

I recently got the results of that test. Pacmans have dropped again. Bugger. I will need to be retested towards the end of the month. Four weeks after this last test. This is a pattern I could well do without.

Not long after I was first diagnosed, I wanted a picture of my brain. The MRI would have allowed me to see the pattern of my lesions. I could have developed a performance piece. Dancers would have skirted round fixed white points. Nerve impulses zooming round my body, their progress stilted and confused by the myelin scarring. I don’t know the patterns. The sands seem to shift with the slightest breeze.

I used to be fine with the vagaries of my life. Never knowing what the next job would be. Where I would have to go. Recently it has been harder to deal with the irregularity. There have been late changes to jobs that were booked but now disappear in the gust of funding scarcity. Whilst there has always been unpredictability, it used to be relatively rare for a job, once booked, to disappear completely.

The patterns in the sand may shift but surely there should always be the same amount of sand there? Added to perhaps but not taken away. Whilst pondering this complication in my not-so-simple life, I remembered the beauty of sand art. At this time of year, when the shofar is sounded in the synagogue, the music in this piece is particularly apt – enjoy: http://youtu.be/U8fl3OokqWk

These 'phew' days

It’s been hot recently. It’s October so we didn’t really expect it. Yes, there were weather forecasts for an Indian summer but, honestly, who totally trusts the weather forecasters? I can see how it is by looking out of the window. Predicting how it will be is a different matter and they sometimes get it wrong.

Phew! It’s been hot. Hot and sunny. Occasionally hot and humid. Here ends the weather forecast or whatever the opposite of forecast is because they do like telling us how it was as well as predicting how it will be.

I don’t think I have detrimental MS effects due to heat. I may not think so or rather remember so but in fact I do. I get tired. I dehydrate quicker which has very bad effects on me. The trouble is I love being out in sunshine.

The excellent Multiple Sclerosis Resource Centre http://www.msrc.co.uk/ put this on Twitter recently: @MSRC Heat Intolerance Page You may find this page of use over these 'phew' days. http://bit.ly/nyOuXk

I may be easily pleased but I liked the use of ‘phew’. I hope there will be more days of sunshine. After just a few my spirits feel lifted. Perhaps next year I’ll even get the chance to wear a bikini. No, maybe not. I’d need severe body shape changing first.