Saturday, 26 January 2013

Keep Calm And Keep Writing

As of yesterday we still had snow and, God help us, we were expecting another 5 - 10cms last night Which thankfully didn't arrive. On the other hand Andy Murray is through to the final of the Australian open so I wouldn't have minded being snowed in on Sunday at all. This morning though the snow  is thawing and we have a temperature above freezing, practically summer.

It was a busy morning on Friday with the Warfarin clinic and a trip to Tesco's taking up most of the morning. Both, unfortunately, were pretty uneventful. The clinic was unusually efficient and I was in and out in under thirty minutes, while Tesco was grave like. I suppose with the snow, the post Christmas blues and the schools being back there were a lot fewer people about.

In the afternoon we went off to Hatfield to pick up son number two in the hope that this Sunday he'll be able to ride back on his motorbike. He rode up to visit just before the snow hit and his bike has been grounded ever since. With the forecast saying the big thaw will set in today we are all hoping this will be our last trip down the motorway and he will get his independence back.

The weather is playing havoc with my PH.

Every time I venture outside I'm in agony. The cold air causes pain like you wouldn't believe and my breathing just gets worse and worse. I'm not so bad indoors in the warmth though sometimes changing from warm to cold or cold to warm so suddenly leaves me feeling dizzy and light headed as I gasp for breath. Using the oxygen helps a bit as does covering my nose and mouth with a scarf but nothing is fool proof unfortunately. Of course the cold weather also effects my skin and I am aware that my lips and finger nails are almost always blue now but in this weather they are almost black. I could quite easily audition for a zombie movie and I'd save them a fortune in make up too.

Those that know me and see me regularly don't pay much attention but yesterday I had to go and see the Occy Health doctor. He is new and has only seen me once before. At our last meeting there was a look of terror in his eyes as I clanked in with oxygen tank and pump attached. I have a feeling he has never met a PH patient before. This time his jaw dropped when he saw me and he wanted to know if I would like to go home. I reassured him that this was 'normal' me when it's cold but I don't think he was too convinced.

A friend of mine and fellow PH sufferer had a nasty experience yesterday. Stacie also writes a blog about her experiences, the link is on the sidebar of this blog, and very good it is too. In her latest blog she was talking about the possibilities of going onto the Flolan pump and the fact that she has been on the transplant list for nine months now. To her utter astonishment she received an email from one of her followers that was less than supportive. The writer said she also had PH and was wheelchair bound and yet had not even been put forward for transplant yet. She wanted to know what right my friend had to be put on the list when she was clearly not as ill as the emailer herself. This naturally upset my friend as secretly we all feel guilty about being put on the list when there are so many others denied the chance. However that doesn't give an embittered, sorry for this, bitch the right to be so nasty to someone just because they have something she doesn't have.

Now I suppose I am fortunate in the fact that I can see a little bit of both sides of the coin.

I was denied transplant and my goodness was I upset. However, and I'm sure my PH friends will correct me if I'm wrong, I don't think I was ever bitter or nasty to those who had got onto the list even though the jealousy burned strong for a while. After being put on the list I can understand feeling a little guilty about it knowing how many miss the mark so I know how both the emailer and the recipient must feel. Unfortunately being ill doesn't automatically make you a good person and those of us who choose to write openly about our lives just have to remember that and carry on. I hope this will not put Stacie off being so open in her blogs because it is her openness that makes them so interesting to read.

In the news I fell about laughing at a scandal that erupted earlier this week over a puppet show for the under fives. The BBC unwittingly aired a Tweenie programme that contained a puppets that looked like Jimmy Savile. My God, such a heinous crime! Parents were ringing in in their droves and at least a hundred complaints were received. Honestly these parents really need to get over themselves. Do they really think their little babies are going to be corrupted by a puppet that looks vaguely like a dead person? The under fives will have no knowledge of Jimmy Savile or his crimes, to them it is just another funny puppet that makes them laugh. OK, I agree that the BBC could have taken more care about what they were showing when the subject is still so sensitive and the investigation is still on going but there has to be sense of proportion.

Jimmy Savile existed, he existed in a very public way. During that time he did some truly awful things but at the same time he did some truly good things too. Stoke Mandeville hospital would not be where it is now without Savile's tireless fund raising for instance. Jimmy Savile cannot be wiped from history so we are all going to have to live with what has happened and eventually move on. Jimmy Savile is dead so no punishment can be laid upon him but we can learn from the experience and put measures in place to prevent a similar situation arising in the future. We can't turn back the clock and we can't kick up a fuss every time his name of image appears.

Well I have hungry mouths to feed and a pile of ironing waiting for me. Fortunately I also have Silent Witness recorded to watch while I'm doing it.