Monday, November 18, 2013
Every year in the UK the BBC (telly people) have a televised event called Children in Need. The programme is designed to encourage members of the public to donate money to Children in Need (a corporate charity) which in turn helps children who are in need. On Friday night the programme generated about thirty one million pounds. According to the CiN official website their vision is to ensure that 'every child in the UK has a childhood which is safe, happy, and secure and allows them the chance to reach their potential.' No matter what you think of shows like this, it does aim to help many of the smaller charities that are desperate for funding in order to continue with their services. A few examples are children's hospices, young carers groups, bereavement services etc. In fact a link of them can be found here (pdf file).
During the show, in between entertainment (depending on what you call entertainment), there are short video clips of the sort of projects that CiN helps and so it will feature a family who are dealing with a difficult situation and how a project they attend such as a hospice etc helps them as a family.
It was during the programme that I made the mistake of idly scrolling through my twitter feed. I read a few 'tweets' (I say it like that because I feel old) and a selection of people with Cystic Fibrosis (you may recall that I have Cf too) were being a bit, you know well quite uppity about it. The tweets I read ranged from:
'Children in Need takes away from other charities like Cystic Fibrosis.'
'Why is Cf never shown on CiN is it too much to ask to get Cf awareness?'
'No Cf shown for us :o( (unhappy face).
The one that finally made me crack and respond wasn't until the next day when I read:
'Cf is a forgotten disease :o( (unhappy face).'
Arghhhh! Cystic Fibrosis is hardly a forgotten disease and yes I know I shouldn't have been wound up by a comment from someone on twitter who I don't know when it's hardly the best place to get your point across. However if Cf was forgotten then I wouldn't be sat here now. Cf patients overall have excellent support and care (yes, I know there will be the exceptions) but the NHS fully recognises it and the treatments for it are at least there and mainly available. We have Cf clinics, Cf nurses, cf doctors, physios, psychologists and dieticians. And on a bad clinic day you might get to see all of them and you want to kill someone by the end of it.
So with that in my mind I made the mistake of hitting 'reply' and simply saying 'It's hardly a forgotten disease.' This unleashed a torrent of bitchiness. Ooops. The 'bitchy' comments were from the same few people but the initial comments about Cf not being shown on the children in need programme were quite widespread and frankly unnecessary.
I went on to say that I didn't think Cf was left in the shadows and that it is good for the smaller charities to get a look in because it is. Of course it is. One programme can't highlight every single charity. I then got accused of implying that Cf gets enough awareness. 'Don't you dare tell me that Cf gets enough awareness because it doesn't,' said one over excited tweeter which was weird because I didn't. Sometimes people will only read what they want to read, a bit like Daily Mail commenters. My almost favourite was 'Don't say I shouldn't raise awareness for Cf (angry face).' Er okay, I won't. Thanks for the advice.
The services that CiN help may also in turn help children with Cf anyway such as play schemes, bereavement services and hospices. In fact I know of a few people whose children with Cf go to a hospice for respite care. It helps all the family immensely. Just because Cf isn't mentioned in a programme (incidentally, Cf has been mentioned on the show in years gone by) doesn't mean it is forgotten. The fact I don't have a problem with Cf not being shown doesn't make me weird, heartless, a fucking idiot, silly bint or otherwise. Nor was I accusing people of forgetting other charities existed. Why on earth would I make such assumptions? I do think people get carried away in their own little world though. The simple fact is that I don't think Cf is forgotten. Children in Need happens to highlight smaller schemes and charities and I don't see a problem with that. It doesn't make me heartless. As one friend who happens to have Cf said to me 'CiN to me is more about the obscure illnesses, grief and poverty.' Even my teenage son doesn't see how one show can be responsible for trying to highlight everything and believe me he'll be the first to get frustrated about lack of understanding.
At the end of the day having an illness that people don't understand can be as frustrating as hell but to be honest all the awareness in the world will not necessarily get across how Cf affects people because it is such a complex and individual illness. I'm just relieved if someone knows what it is if I ever need to explain it (especially to a Gp, ha ha etc) but then it's down to me to explain how it affects my life if I choose to do so. I hope that makes sense.
So to summarise, I have not or have ever said that cystic fibrosis gets enough awareness. I have not or ever said that people shouldn't raise awareness. I do however think some people get too wrapped up in their own world and forget to see a the bigger picture. Not everyone, just some people.
Just a quick edit - a friend with Cf just told me that Children In Need paid for her physio bed quite a few years ago.
Quick edit two - Children in Need has helped fund The Lime Arts Programme: 'Lime art has an ongoing partnership with the Manchester Adult Cystic Fibrosis Centre. We deliver a rolling a programme of arts projects focusing on engaging patients in creative activity. Professional artists specialising in different media, i.e. music, animation, painting and drawing, creative writing, work one to one with patients during their stay on Pearce Ward.'
Wednesday, June 26, 2013
I first posted this on my old blog back in 2008.
As much as I have grudges against fragrances for the home, I also have issues with Cillit bang and the adverts for it. Firstly a fictional character called Barry Scott who is meant to be making us want to buy this stuff booms out of your TV so loudly that the windows rattle and any animals within earshot roll over in submission:
'Hi, I'm Barry Scott, Cillit Bang will even erase the disgustingrancid smell of putrid sheets after a torrid affair with yourneighbour whilst your wife is out shopping for cardigans.BANG AND THE DIRT IS GONE.'
Get lost Barry. I prefer to use bleach and Cif. Or something. Maybe Flash liquid depending on how frisky I feel. I like the option. I don't want to use one product to clean everything. It is boring.
Look at the pic below though. I know it is a bit small, but honestly. That toilet is brown! Whose toilet gets that brown? The baths in the adverts usually have thick black scum in them. How dirty do the folk at Cillit Bang think we all are?
'What stain are you trying to clean? I'll tell you Barry, I'm trying to clean off the normal stuff, not 25 years of dirt and poo from up my walls.
Cillit Bang currently claims that you only need to buy their one all purpose product to clean everything from poopy stains, cum stains and the saliva off children's toys. Hopefully not with the same cloth.
So I mailed them to ask a question.
I cunningly posed as Dorothy, who is an elderly woman whose husband stays in bed all day playing dominoes. Here is what I asked:
Dear Barry Scott,
Is it safe to use your cillit bang product on my false teeth? You say it cleans anything. My teeth get stained due to all the coffee I drink and my husband gets confused if I soak them in my denture cleaner. He mistakes it for water and the solution gives him the runs.
They actually replied with the following:
Thank you for your email regarding Cillit Bang. We strongly advise that you DO NOT use any of the Cillit Bang range to remove stains from your Dentures. We do produce Steradent which would be suitable for this purpose ensuring that you read directions for suitability.
Kind regards, Cillit Bang
To summarise, they have lied about their product. It does not clean everything.
Friday, June 21, 2013
This the conversation with my husband this morning.
Tim: 'I've something to tell you. It's important and I don't know how you'll take it.'
Me: 'What? Have you broken something?'
Tim: ' No.'
Me: 'What then?'
Tim: 'I think it was me that got Alesha Dixon pregnant.'
Me: 'But you don't know Alesha Dixon so I'm guessing it's highly improbable.'
Tim: 'She came round the other night when you were asleep.'
Me: 'Right. How did she know where you live?'
Tim: 'Don't know she just appeared in the middle of the night, saw me and I think she got pregnant just by looking at me.'
Me: 'Crikey, she found out she was pregnant very quickly then.'
Tim: 'Yes. Yes she did.'
Me: 'If she came round in the middle of the night, why didn't the dog bark and why didn't I hear someone knocking at the door?'
Tim: 'You were asleep and the dog was asleep.'
Me: 'Right. So it managed to wake just you up even thought I'm the worlds lightest sleeper, you are the worlds heaviest sleeper and the dog barks at ants in the garden?'
Me: 'What will you call the baby?'
Tim: 'I wanted a name that isn't too showbizzy or catchy, so we will call the baby Erotica.'
Me: 'Ok, make me some tea please.'
Tim: 'Yes. You've taken this very well.
Me: 'Yes I have.'
Have a rare photo of me and the teenager.
Thursday, June 20, 2013
My last post discussed an article written by a certain Stasia Bliss who claimed that herbal remedies and yoga are an alternative to transplant in people with Cystic Fibrosis. That article has now been removed and not before time.
That's all I have to say about that now.
Monday, June 17, 2013
Read the following article on the link below, but for goodness sake don't take it seriously.
I’m often incensed by things I read online and I’ll have a moan to myself and then get on with my life. This article has enraged me. It is one of the most offensive articles I have ever read regarding Cf. Not only is it offensive to those who deal with Cf every day, it is condescending, ill informed, factually incorrect and a potentially damaging article. To the memory of people with Cf who have died then this article is sickening and upsetting. If this sounds dramatic to the average reader then read the comments following the article and you will see that my feelings on this are not unique.
This is my reply to this woman, I forget to say however that not all people with cystic fibrosis opt to go down the transplant route. Excuse any mistakes I'm terrible and correcting my own stuff. I become blind to it:
Cystic Fibrosis is genetic. People are not GENERALLY born with it they ARE born with it. You’d think that in writing something so inflammatory then you’d at least get your basic facts correct. This article makes it sound like people with Cystic Fibrosis (pwcf) choose to have a transplant because they can’t be bothered to try anything else. Let me tell you, once someone with Cf is at the stage where they ‘choose’ to have a transplant the lungs are damaged beyond repair. There is no going back. Even if you aren’t at the transplant stage then the methods of oregano oil, lobelia and eucalyptus will not stop Cf causing havoc in the body. If you think (yes you Stasia Bliss) that oregano oil and yoga is a decent and effective alternative to a transplant then I suggest you suffer from an extreme form of aggressive and debilitating ignorance that no amount of herb will treat. I’m sorry about that. Maybe try rubbing extra strong chilli oil into your eyes. This needs to be done six times a day to have a cumulative effect. Obviously check with a practitioner first.
Another fact you need to get right Stasia is that Cf will NOT find its way into newly transplanted lungs. I suspect you’ve taken too many potions that have addled your research brain. A lesson for us all I think.
The article is detrimental and damaging to those who campaign for Cf awareness and transplant awareness. If someone came up to me and suggested that herbs and yoga would help my current lung function rather than all the effort I put in myself then I could not be held responsible for my actions.
Yoga may give someone a calming effect on the mind but it is not and never will be a curative for someone who needs a transplant or otherwise. Like I said earlier the lungs are irreversibly damaged. How do you suggest that yoga self heals damaged lungs? Is magic involved? Wow, that would be good. How would you expect a person with twenty percent lung function or lower to do yoga? It can be hard enough work getting your socks on in the morning with lung function higher than that. You’ve no idea have you. That wasn’t a question. It was a statement.
One of my favourites in all this Stasia is your suggestion of lobelia to induce vomiting (sometimes violently) in order to get rid of the mucous in the lungs. Have you actually read this back? On the most basic level since when does violently vomiting help get rid of anything from the lungs? I assume you did not do biology at school. In any case violently vomiting for 7-8 hours is not good for anybody. Remember you said all this can help rather than choosing a transplant. I don’t know where to start. I hope to god that someone who is desperate for help does not read this pathetic excuse for ‘advice’ and try this method. I suggest Stasia that you take lobelia yourself and vomit for 7-8 hours and then see how tired and strained you would feel. I’m not quite at transplant stage and if I vomit for two minutes I feel exhausted and breathless. What you are suggesting is at best stupid and dangerous. Keep going with that chilli oil. Keep checking with your practitioner. Whilst there, get your bowels checked because you are obviously full of something. Try Senokot. You’ll need to quadruple the dose.
Now on to emotional well-being. You can’t heal CF with emotional well-being. If you could heal Cf through well being and happiness then I’d be running around right now. Unfortunately I didn’t smile enough the other week and got myself a pneumothorax. My bad. It’s my mistake for my ‘thick belief that life won’t work’ for me. I’ll tell that to my fifteen year old son and husband. They’ll be so cheesed off that some of my health issues are down to an emotional state. How rude and misinformed can one person be? Have you any idea how offensive you are? Would you tell someone with depression to snap out of it? I dare say you would. Did I mention the chilli oil and eyes? Keep going.
It is suggested in the final paragraph and I quote ‘Serious and even ‘incurable’ diseases have been treated with natural medicine with great success, even in the final hours.’ Words fail me. Have you ever seen a person with Cf in their final hours? Respiratory death is rarely peaceful and your suggestion that natural medicine may save someone with Cf in their final hours is one of the most insulting things I have ever read. It makes me feel sick that someone can be so misinformed and think it fine to write such trash and then have the audacity to say ‘Just so long as misinformation and ignorance do not contribute to a choice that can not be reversed.’ Absolutely unbelievable. All your suggestions are misinformed, every single one of them. You clearly have little or no common sense. I feel sorry that you hold such ridiculous notions. I’m even more sorry that this article was ever allowed to be published. It should be retracted with a full apology.