I have to start with this today. My favourite story of the year so far.
A lion had been photographed in Essex resulting in the police deploying two helicopters, at enormous expense, several armed officers and half the keepers from a nearby zoo. I have seen the photo and how anyone mistook that for a lion is beyond me, unless of course they'd had a little drinky or two. The picture shows a bright ginger animal with pointy ears, a flat-ish muzzle and a white bib, lions tend to be beige have rounded fluffy ears, a prominent muzzle and although their bibs are lighter, they are rarely white. I don't know which 'expert' this photo was shown to but maybe an eye test might be in order. As it turned out the 'lion' was later identified as Teddy Bear a Maine Coon. I will allow that Teddy is on the large size even for a Maine but a lion? I think the residents of St Osyth can rest easy in their beds, until one of them gets eaten of course.
Having said all that alerts regarding wild animals are quite common in areas that have nearby zoos or wildlife parks but these alerts are almost always false. Animals do get out though, I know because I've seen them myself. I'll never forget my close encounter with a wallaby when walking across the local downs. It is well known locally that a small colony now lives in the area following several escapes and some breeding amongst the escapees. However Wallabies are one thing big cats something entirely different. As much as I'd love to believe in the 'beast of Bodmin' etc I can't see it somehow. A cat that size would eat a lot and so things would go missing. Also, just like Nessie, to still be alive after all this time breeding must be taking place and in theory there must be dozens out there now. Yet the only evidence we have are blurred, grainy photos and videos from cameras mysteriously lacking any form of zoom function.
So how am I? Well I won't lie, I have been pretty down the last few days.
Throughout our lives we all have battles to fight, some are big, some are petty, some are for the good of many and some are for the good of one person, you. The common element in all these battles is that something you hold dear is being threatened. I have never been one to be walked over and have fought many battles and I've found that the secret to winning is timing. Picking the right battle at the right time is essential, make the mistake of going out with all guns blazing at the wrong moment means you loose, plain and simple. However, despite indications to the contrary, I am a very patient person, time means nothing to me, I wait it out until the time is right. So for now this particular battle has been put on the back burner.
There are people, and I thank you all for the emails and messages of support I've been receiving, who think I should fight, not just for me but for everyone who has or might face a similar situation. Some have even hinted that I am selfish for not doing so. To those people I'd just like to remind them of the campaigning I did on their behalf, and for myself, to stop NICE withdrawing funding for our much needed medicines. I also took on the airlines to stop them charging hundreds of pounds for in flight oxygen. And before anyone starts shouting, I didn't do these things by myself, I was part of a team. However I did attend select committees in parliament, I did meet politicians sympathetic to our cause, I did discuss our case on radio and I did appear in newspapers, so I'm not adverse to fighting my corner. However the other thing about battles is that you can only really fight one at a time. I am already fighting a battle, a battle for the chance to live and, yes it is selfish, but that is the most important battle right now. When that battle has been won then I can look at everything else, but for now I'm saving my strength and energy.
So what actually caused all this distress and anger, most of you know by now as I'm sure the grapevine has been working overtime. However as a warning to those of you don't know here are the facts.
It was decided in a meeting between a GP working for occupational health, HR, and those above me that because I have less oxygen in my blood my 'thought processes' may not be as quick as those with normal blood oxygen. And because of that I have been prevented from doing the more complex aspects of my work. This decision was made without anyone seeking advice from a PH expert. What is even more annoying this decision hasn't been made because of anything I've actually done but in case something happens in the future.
Anyone who knows anything about PH or actually has PH will probably understand exactly how I felt on receiving this little bit of news. We all know what it is like to have our condition completely misunderstood, is there anyone with PH who has not been told by someone that they 'only have high blood pressure'? I am fortunate that my employers do understand how ill I am and that I do need special consideration. In some ways they have bent over backwards to accommodate me. I will also say in fairness that there are days when I can barely function so they may have a point. However my problem with this decision is that it was done behind my back. If I'd been included in the meeting, given a chance to put my side of things, even if the outcome had been the same, at least I'd have had a chance and maybe understood better their reasoning.
The most unfortunate outcome of all this is I have lost my trust. I felt comfortable, I was settled and happy and had begun to relax. I know my working life is coming to an end, with my age and my health no new employers would take me on, so I felt lucky that I'd found somewhere I could end my working life happy and fulfilled. I will now be on my guard, where I once told them everything I will now cherry pick any developments in my condition and will never be as open again. Such a shame.
So am I still angry, oh yes, I am still angry but the overwhelming feeling now is one of disappointment.
Talking of disappointment I was amazed yesterday when someone who really should know better made fun of me. I was walking through the lobby of my building decked out in my flolan pump and oxygen pack when this bloke who I've never seen before shouted 'here she comes, our resident ghost buster.' Now I like to think I've got a good, if quirky, sense of humour but amused I was not. I gave him the 'death stare' and continued on my way. If he or anyone else does it again however, they are going to find themselves quickly educated.
Paralympics Watch
It is the opening ceremony tonight and I really cannot wait. Having been bowled over by the Olympics I have great hopes for these very special games.
Of course there has to be a fly in the ointment and this time it is yet another ticket scandal. Whereas able bodied spectators can book their tickets on a free website, disabled supporters are having to book theirs via a premium rate telephone line. Given that as a whole the disabled are less well off than the able bodied this has been seen as one of the worst forms of discrimination. When challenged the powers that be say that disabled people need to ring in to ensure their particular needs are catered for. Fair enough but if that really is the case why not provide a free line?
Well I'm off to make lunch, sausage and mash for them, blueberry yogurt and grapes for me. I did manage half a chicken mayo sandwich and a bowl of cornflakes yesterday and kept them down so things are looking up.
A lion had been photographed in Essex resulting in the police deploying two helicopters, at enormous expense, several armed officers and half the keepers from a nearby zoo. I have seen the photo and how anyone mistook that for a lion is beyond me, unless of course they'd had a little drinky or two. The picture shows a bright ginger animal with pointy ears, a flat-ish muzzle and a white bib, lions tend to be beige have rounded fluffy ears, a prominent muzzle and although their bibs are lighter, they are rarely white. I don't know which 'expert' this photo was shown to but maybe an eye test might be in order. As it turned out the 'lion' was later identified as Teddy Bear a Maine Coon. I will allow that Teddy is on the large size even for a Maine but a lion? I think the residents of St Osyth can rest easy in their beds, until one of them gets eaten of course.
Having said all that alerts regarding wild animals are quite common in areas that have nearby zoos or wildlife parks but these alerts are almost always false. Animals do get out though, I know because I've seen them myself. I'll never forget my close encounter with a wallaby when walking across the local downs. It is well known locally that a small colony now lives in the area following several escapes and some breeding amongst the escapees. However Wallabies are one thing big cats something entirely different. As much as I'd love to believe in the 'beast of Bodmin' etc I can't see it somehow. A cat that size would eat a lot and so things would go missing. Also, just like Nessie, to still be alive after all this time breeding must be taking place and in theory there must be dozens out there now. Yet the only evidence we have are blurred, grainy photos and videos from cameras mysteriously lacking any form of zoom function.
So how am I? Well I won't lie, I have been pretty down the last few days.
Throughout our lives we all have battles to fight, some are big, some are petty, some are for the good of many and some are for the good of one person, you. The common element in all these battles is that something you hold dear is being threatened. I have never been one to be walked over and have fought many battles and I've found that the secret to winning is timing. Picking the right battle at the right time is essential, make the mistake of going out with all guns blazing at the wrong moment means you loose, plain and simple. However, despite indications to the contrary, I am a very patient person, time means nothing to me, I wait it out until the time is right. So for now this particular battle has been put on the back burner.
There are people, and I thank you all for the emails and messages of support I've been receiving, who think I should fight, not just for me but for everyone who has or might face a similar situation. Some have even hinted that I am selfish for not doing so. To those people I'd just like to remind them of the campaigning I did on their behalf, and for myself, to stop NICE withdrawing funding for our much needed medicines. I also took on the airlines to stop them charging hundreds of pounds for in flight oxygen. And before anyone starts shouting, I didn't do these things by myself, I was part of a team. However I did attend select committees in parliament, I did meet politicians sympathetic to our cause, I did discuss our case on radio and I did appear in newspapers, so I'm not adverse to fighting my corner. However the other thing about battles is that you can only really fight one at a time. I am already fighting a battle, a battle for the chance to live and, yes it is selfish, but that is the most important battle right now. When that battle has been won then I can look at everything else, but for now I'm saving my strength and energy.
So what actually caused all this distress and anger, most of you know by now as I'm sure the grapevine has been working overtime. However as a warning to those of you don't know here are the facts.
It was decided in a meeting between a GP working for occupational health, HR, and those above me that because I have less oxygen in my blood my 'thought processes' may not be as quick as those with normal blood oxygen. And because of that I have been prevented from doing the more complex aspects of my work. This decision was made without anyone seeking advice from a PH expert. What is even more annoying this decision hasn't been made because of anything I've actually done but in case something happens in the future.
Anyone who knows anything about PH or actually has PH will probably understand exactly how I felt on receiving this little bit of news. We all know what it is like to have our condition completely misunderstood, is there anyone with PH who has not been told by someone that they 'only have high blood pressure'? I am fortunate that my employers do understand how ill I am and that I do need special consideration. In some ways they have bent over backwards to accommodate me. I will also say in fairness that there are days when I can barely function so they may have a point. However my problem with this decision is that it was done behind my back. If I'd been included in the meeting, given a chance to put my side of things, even if the outcome had been the same, at least I'd have had a chance and maybe understood better their reasoning.
The most unfortunate outcome of all this is I have lost my trust. I felt comfortable, I was settled and happy and had begun to relax. I know my working life is coming to an end, with my age and my health no new employers would take me on, so I felt lucky that I'd found somewhere I could end my working life happy and fulfilled. I will now be on my guard, where I once told them everything I will now cherry pick any developments in my condition and will never be as open again. Such a shame.
So am I still angry, oh yes, I am still angry but the overwhelming feeling now is one of disappointment.
Talking of disappointment I was amazed yesterday when someone who really should know better made fun of me. I was walking through the lobby of my building decked out in my flolan pump and oxygen pack when this bloke who I've never seen before shouted 'here she comes, our resident ghost buster.' Now I like to think I've got a good, if quirky, sense of humour but amused I was not. I gave him the 'death stare' and continued on my way. If he or anyone else does it again however, they are going to find themselves quickly educated.
Paralympics Watch
It is the opening ceremony tonight and I really cannot wait. Having been bowled over by the Olympics I have great hopes for these very special games.
Of course there has to be a fly in the ointment and this time it is yet another ticket scandal. Whereas able bodied spectators can book their tickets on a free website, disabled supporters are having to book theirs via a premium rate telephone line. Given that as a whole the disabled are less well off than the able bodied this has been seen as one of the worst forms of discrimination. When challenged the powers that be say that disabled people need to ring in to ensure their particular needs are catered for. Fair enough but if that really is the case why not provide a free line?
Well I'm off to make lunch, sausage and mash for them, blueberry yogurt and grapes for me. I did manage half a chicken mayo sandwich and a bowl of cornflakes yesterday and kept them down so things are looking up.
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