Tuesday, 17 April 2012

Rip Off!

I'm sitting here in the middle of a drought hit county listening to the rain being lashed against the window by gale force winds. Typical, the minute they put a  hosepipe ban in place the heavens opened and we haven't had a completely dry day since. Of course this being a special year with the jubilee and Olympics taking place this weather is likely to continue until at least September. It is always the same in Britain, plan massive, mostly outdoor, events and down comes the rain. Tell people they can't water their gardens and they don't need to. Maybe next year, when there is nothing special happening, at least not that I know of, it might be the summer of 1976 again, especially if the weather people can be bribed into predicting freezing temperatures and torrential rain.

My dream was back again last night, not the entire thing, just the bit where I hauled the first goblin out of the shed window and threw him to the ground. This played on a loop over and over but I never managed to progress on to what happened next, very odd.

I was saddened today to learn of the death of yet another friend with Pulmonary Hypertension. I never met Suzi personally but had chatted to her on the PH forums and there are so few of us that there is an 'all in it together' vibe that makes us close. There has been a rather alarming number of deaths from PH over the last few months, more than I can remember in previous years. I know it is a very selfish thing to say but it makes me nervous and very aware that I am now well beyond my predicted life expectancy. There have been great leaps forward in treatments and possible cures over the last couple of years. New drugs have been developed to keep us going, stem cell research is still on going but those taking part talk about it as if it is a miracle cure and of course transplant survival rates, especially for lungs have increased. Sadly all these things are not happening quickly enough and many more will die before a proper cure is found.

In today's news a story that is particularly close to my heart.

A couple of years ago, on behalf of the PH Association, I and several other PH sufferers took part in a campaign to make airlines stop charging for oxygen on flights. At the time the majority of airlines charged any thing between £100 and £300 pounds to provide oxygen often doubling the cost of the flight. During the campaign I took part in a select committee in parliament and attended several functions there intended to raise awareness amongst MP's and the like. I even went on an early morning radio show to highlight the cause, nervous or what? I think we made a difference, at least the scandal was out in the open and some airlines did change their policies. So imagine my horror when reading an online paper to find the one airline is charging £660 or 800 euros for a three year old to have oxygen on a flight. This flight should be taking her for treatment for her rare condition but her cash strapped parents cannot afford this extra charge. What an outrage, I shall not be travelling by KLM again, and if you are disabled or know someone who is I suggest you might want to think twice.
Full story here http://www.thesun.co.uk/sol/homepage/news/4260304/Heartless-airline-KLM-stops-ill-toddler-Jolina-Skye-Barton-from-getting-treatment.html

I've got the weekly trip to Tesco to look forward to this afternoon, I can only hope the weather perks up before we venture out. I'm going to try and find some tempting little treats for Andrew. He is eating again now but not normally and is very tired and weak. He was supposed to return to school today but has had to give it a miss as he just doesn't feel up to it. He's better, there is no doubt about it, but not himself, hopefully it won't belong before he is bouncing around again.

I have to make a correction about the trial of Anders Breivik. Yesterday I said that they had decided before the trial that he was sane. However watching a news report today it seems that the assessment of his sanity is on going and will continue right through the trial.

The trip to Tesco was more exciting than usual as Peter took the opportunity to try out our new satnav after the other one died on us a few weeks ago. I shall miss our old satnav as it had developed a rather endearing stutter. This one was efficient, rather posh and warned us about a speed camera that wasn't there while ignoring one that was.

Time for a cuppa and to put my feet up.