Munchausen by Internet

It is a sad day today in the American CF community, and the CF community as a whole. There has been a blog running about a girl called Pepe who supposedly had CF and went through a transplant, the person has been exposed as a fake, or probably more acurately someone suffering from Munchausen by Internet.

I was not an avid reader of the blog, I don't know why but I just never got around to checking it regularly, however it did have quite an audience of people who were hoping and praying for Pepe and who were utterly emotionally, and in some cases financially, involved in the story.

It has annoyed and upset me, despite my lack of personal involvement, on principle. Although I wasn't involved in her story there have been others who's story I have become involved with such as Emily's and Oli's, I can't imagine how utterly betrayed I would have felt had either of their blogs turned out to be hoaxes. There have been some very low points in the last few years where literally the only thing that has got me through to the end of the day has been a little voice in my head saying 'If Emily and Oli could do this, worse than this, then you can too!'.

It is a disgusting manipulation of the emotions and trust of the CF and transplant community, a community that is made of vulnerable people.

Almost more scary however has been the way sections of the community has reacted, someone has set up a blog literally, and very successfully, stalking this person and every website they have ever contributed to, many have made violent threats. I understand the anger, but at the same time it is just the internet, you can just never truly know unless you KNOW that person in real life, it never ceases to amaze me how het up people can get over someone they don't know!

It has served as a reminder to me just exactly what the internet is made up of. I am always telling friends off for posting details that link them to a specific place or taking part in those stupid 'what's your porn name' things that are just designed to get personal information out of you. Even today I have been sat here thinking back over all my posts and trying to work out if at any point I've given too much information away about where we live and what are lives are like.

I guess that is the problem with a blog, you want people to see it and read about you, but at the same time you don't really want people to know anything too personal. My friend Adam and I actually discussed my blog and he commented on how different it is in style to my old one which was much more emotional and detailed. I admit that even I at times look at this blog with a certain level of dislike, it's a very 'happy clappy this is what I did today' kind of affair, there is very little in depth analysis of how I actually feel and what I think about things, but then I think I have become more aware of my potential audience

This a totally public forum after all, any future employer or client of mine could read it and I'm not sure I really want them to know all the dark emotional wrangling that goes on in my little mind, nor do people I know read this really want to know the gory details of what Luke and I do with chocolate buttons of a nighttime ;o)

I don't want to be at risk, I don't want my family to be at risk, yet at the same time I like having a blog, I even stated it as one of my hobbys on my birthclub, and heaven knows I have few hobbys as they are hard things to maintain when you are unwell and have no energy all the time. I guess you just have to be careful.

I find it amazing how involved strangers do become (and I write this like I'm not one of them haha!) but when you read these blogs you really do begin to feel like you KNOW the people involved and begin to share their hopes and ambitions with them, and cry and worry at their troubles. On some levels it scares me, and on other levels I think it is actually the true power of blogging, the way it gives people a platform to speak and an audience to listen, an audience to care, I think it brings out the best of the human spirit, and demonstrates far better than any myspacefacebook can what true social networking is about, it's not some empty list of 'friends' it is about connecting, and about caring, you give up something of yourself and in return you get something back.


So back to normal happy clappy scheduling we go...

Thursday - was a day of rest, I laid about the house and did nothing but snuggle with my boys adn watch DVD's in order to recover from the excitement caused by the mices and ballerinas.

I watched 'The Last King of Scotland' it is VERY good, though very sad as basically it's happening all over again as we speak in Zimbabwae and yet again to my shame it is us English who had a major hand in putting a madman in charge.

However I am also angry with the people of Africa as I whole, why don't they get their shit together and sort themselves out?? They could be a rich nation they have lots of valuable natural resources and a lot of manpower, if they just stopped bickering and squandering it all on corruption and guns and stopped shilly-shallying about waiting for someone else to sort it out they would all be a lot better off!! That said if I had a bunch of guys in a jeep with massive guns riding through my village shooting and raping everything in site I don't suppose I would be that keen to make a stand and make a change either. Sad world.

I thought the most clever thing about the whole film however was how little it showed of the ongoing genocide, despite the fact the characters were right at the centre of it. It demonstrated exactly how these atrocities happen and continue to happen, because those who could do something choose to bury their heads in the sand because they personally have something to gain from doing so.

And if all that heavy political stuff doesn't do it for you it also has lots of shots of James MacAvoy's bottom in it :o)

Friday - I meant to take Edward swimming but his skin was so bad I thought it unwise as I didn't want to aggravate it. So I spent the morning supervising Edward's nappy-free time whilst watching 'No Country For Old Men'. It was a good film, though I think it thought it was more intelligent than it actually was, I felt the serial killer was a silly character who spoilt the film and they just used him as a device to say certain things, but as he was so melodramatic and cliché they'd have been better off leaving him out, Tommy Lee Jones however was utterly fantastic.

I then took that and the other DVD as well as some books back to the library as they were only on short loan. I left Edward in his daddy's capable hands as I couldn't be bothered with heaving him on and off the bus!

I wandered back slowly via some shops where I got some nice candle/sauce dishes and then the pharmacy. Luke cooked us dinner we had tasty chicken kari...he's branching out :o)

Saturday - I had a lovely long sleep from 11pm last night till 8.30 this morning!! It was truly blissful :o) I think the sleepies must have stayed with me as I really haven't done much all day expect faff about on-line. I planned to go and get maple syrup so I could do American pancakes which I have been craving lately but in the end lazed out and just made Luke a plain bacon sandwich.

In the afternoon/evening I made roast beef, Edward particularly liked the Yorkshire puddings :o)

After Luke finishes raiding with his WHOLE guild (very exciting stuff I can tell you!) we are going to watch some more Trigun which is turning out to be rather good, it really makes me want to roleplay though as the structure of the episodes feels so much like an RPG plot, it really makes me laugh as alot of the time the animation of the lead character is naff......but whenever he is saying something profound or trying to chat up a girl they sex him up manga styleeee!!

Exhausted and Incabable...

... that's how I feel today, it is very depressing and upsetting. I was meant to take Edward to be weighed and measured today as I haven't been for ages and it needs to be done, I also have a few questions I want to ask the health visitor.

There are a combination of factors I think that are making me feel unwell. My chest is obviously not great, and I'm not clearing well during physio still, however I don't think I have a raging infection and Luke agrees as I tend to smell different when I do. I think my weight is playing a major factor, I don't know how little I actually weigh at the moment, which is naughty of me as I've been supposed to be making an effort to put on weight, but I'm struggling. The stupid thing is if I do my feed the weight would go on without any problems, but I just keep not doing it, there are reasons for this.

The first and most obvious is just sheer laziness and not being bothered with all the faff of setting it up each night and taking it down each morning, however that plays a relatively small part as I know full well I can ask Luke to get it for me.

The second reason is exhaustion, I'm so tired and desperate to get a good nights sleep I am reluctant to hook up my pump as it frequently alarms in the night, I also worry constantly about it leaking, and will often wake with a start when I lie on the cold tube thinking it has disconnected.

Thirdly I worry about getting tummy ache and feeling bloated, it is a lot of milk and a big strain on my digestion which is really not working well at all at the moment. It's hard to motivate myself to do something I know is going to give me tummy ache.

Finally since my pregnancy I have had some very bizzare issues relating to body confidence. It is VERY unlike me and I can't really understand why I've suddenly started having problems with this aspect of self-confidence, I assume it must be some strange consequence of the hormones and perhaps a subconscious adjustment to my new identity as a mother. I know I'm not fat, I know I can easily be about 55kg before I get fat (I suspect at the moment I'm more like 45/48jg) however any weight I put on instantly makes me feel really fat. I think mentally I could overcome this if it wasn't for the fact that the feed makes my tummy bloated a lot of the time, and so I get a really fat lower belly, which looks even worse at the moment as I'm so thin. I know it's silly and shallow but it's how I feel and I'm struggling to overcome it constructively.

I think the knowledge that if I did do my feed the weight would pile on without problems (aside from the ones mentioned here) is almost a downside as it makes me complacent which I shouldn't be as a high weight is a good safety cushion to have.

Today has just been ridiculous, the only reason I managed to do what I did (namely tidy the bedroom and make the bed) is because I bought this lovely new bedding for Luke and I ages ago but we have been waiting for us both to be here, and for us to have the house to ourselves before we put it on. I wanted to get it done as I wanted it to be a nice romantic surprise for him when he got home.

However I wanted to do so much more, there were some lovely ideas I had about getting some chocolate buttons for us to eat together. I also had some other things I REALLY needed to do today such as put in my prescription, getting Edward measured as I said earlier, as well as taking him swimming, It was so frustrating to know I just couldn't do it.

I started to get quiet upset as I was just so exhausted, I just did a few tiny bits and then had to lay on the bed with Edward for about half an hour despite having had a lie-in this morning (after sorting Edward first thing). This has been going on all of the last week or so, I have frequently been having to nap in the day, and even on days I haven't actually had a nap I've seriously thought about it or had to have a bit of a lay down and a rest, this is despite having done hardly anything really...today the cumulation of it all caught up with me.

It makes me worry about what kind of mother I'm going to be to Edward and what kind of girl-friend I am to Luke as I'm not that nice when I'm tired, I get grumpy and impatient. I know I haven't been very good with Edward the last few days when really he needed me to be understanding. I am also really stressing about uni, I just keep thinking if I'm this tired when I'm doing nothing, how am I going to cope with two mornings a week at uni.

I then think that part of the reason I've become so weak and pathetic is exactly because I've done nothing for over a year. Yes I have a bunch of baby activities lined up I could go to weekly, a bunch of friends I want to go visit, as well as ideas for things Luke and I could go out and do together, but they are all optional, so the minute I feel a bit feeble it's easy to bail out, there is nothing to push me and force me to go, which I don't think is a good thing, I think I need that push.

*sigh*

I don't know how much of this melancholy stems from a conversation I had with a friend of mine last night about transplants. She had one a few years ago and now has a lung function of 80%. I would love to be that well again, to be that free again, it is so frustrating and imprisoning to be this ill all the time. I just want a break from it, just to have a few weeks of being well so I could get on and go out and do all the stuff I keep putting off because I feel to tired and unwell. I know I shouldn't wish myself to be unwell enough to need a transplant, but hovering just above the boderline where my quality of life is questionable, makes me kind of wish I could just have one, get it over and done with, and get on with living.

Anyway...

Luke took Fred home today, it was lovely having him here, it was so sweet to see him playing with Edward who he adores, it was also nice to see Luke having fun playing with his little brother.

I really enjoyed having the house to myself, it's such a rare thing as Luke hardly ever goes out without me, and if he does it's usually just to pop to the shops, it's never for very long. So it was a treat especially after it's been so manic here recently with all sorts of people coming and going, it was nice to have my nice quiet house back to myself.

Even more than the space though I enjoyed the anticipation of expecting Luke to come home to me, it may sound mad but I think it says a lot about a relationship if you miss the person you love and really look forward to seeing them again when you are apart, even if it is only just for an afternoon :o)

Edward checking out the newly made bed!