Tuesday, July 06, 2010

I'm back!

My goodness. Who would have thought that my blog would still be open? Surely it should have been closed? Isn't it some sort of environmental hazard to keep such rubbish open and exposed for so long? You would have thought it would have been buried deep, far beyond anyone eyes, deeper than a Giles Brandreth jumper or John Terry's morals? Anyway, luckily for me the blog is alive and well. OK, maybe not well, but it's alive.

So I take up the reins again, almost 4 years after I last spraffled on this blog. I don't think spraffled is a word, but I'd like to spread it. 'Spraffled' means to write or talk nonsense, similar to waffle, but even more nonsensical and producing even less conducive discourse. Anyway, spread the word. I went to see a comedian called Alex Horne not too long ago and as part of his show he relays the produce of a project of his to get certain words into the dictionary. I recommend you visit his site. http://www.alexhorne.com/ Very funny man, he reminded somewhat of Dave Gorman, not just in comedy, but also in facial hair.

Anyway, I hear you say (I hear me say, not sure anyone would read this), why back here after so much time? Well, I was writing on the CF Trust forum, having a rant, wondering whether such a forum was the place to have such a rant and wondering whether I was trying to gratify my own desire to be heard by others by spraffling on about various CF perspectives on life and how that perspective alters overtime. In the process of having this rant the sodding computer decides to take over and censor me by deleting the post. OK, maybe I should thank the computer for protecting me from myself, and alleviating the pain on others with CF of having to read my rant - have they not suffered enough already? Point is, I was in the middle of a rant and I still wanted to express my thoughts, but realised it wasn't necessary to share those thoughts with the general public. I then remembered my blog.

OK, what was the rant about? I was looking at a site a fellow CF peep had posted called 'CF Voice'. Anyway, there was a section in the adult bit called 'Living Uninsured'. I kinda hoped the video would be about the flawed health system in the US, but it wasn't. The girl talks about living life to the full and not letting CF get in the way. This sentiment I fully agree with. However, she then says that she sees people with CF being frightened to death about the next bug they catch or picking up something from somewhere and that those thoughts restricted them. After the 'I live life to the full' sentence(I'm paraphrasing), she then says her lung function/fev1 is 70-80%. This is where I have my problem.

When I was healthier I clubbed 6 nights a week, went travelling round Europe and N America. I wouldn't let anything stop me, there wasn't any limit on life. However, my lung function is now around 30% and I can't do the things I once did, no more clubbing, no more free travelling without care. However, I still live to the best of my ability, but I do live with that fear of catching a bug or having a lung collapse that could really screw me over. When I was 40-50% lung function I still didn't have a care, just like the lady, but now I have no choice but to be wary. My perspective, as does others, alters with decline. Whilst some say they live life to the limit, the point is that there are limits and those limits change.

I, like I'm sure others with CF have sometimes queried others for the way they deal with their CF. For example, I've never understood why some people with CF don't disclose their CF? It isn't anything to be ashamed of, you won't be stoned for it. In fact, to step up and say 'I have CF' I believe is the stronger thing to do, it means you are content with having it, you don't need to hide it and as a result any dips in health or treatment can be properly confronted without feeling you need to hide behind a curtain. In a similar way individuals are open about being gay, religious or ginger, people with conditions of health should be open too. Not that I'm comparing them all, I'm just saying that in this day and age people should be open and allowed to be who they are and not feel the need to hide a condition in fear of being treated differently. The point here is that people with CF choose to deal with CF in different ways.

Having said all that, I cannot say to someone else with CF 'that's the wrong way to deal with CF'. Some people like to disclose they have CF, some don't. Some people like to live life with CF burning short but bright, while others like to be a dull glow for a long time. We all deal with our CF differently and have different techniques, aspirations and philosophies on how to deal with CF. So my point, whilst perhaps on occasion being slightly hypocritical, is that, the lady cannot be critical of others for letting CF 'get in the way'. Her limits are not the same as someone's on the transplant list and on o2 24/7. I think Gandalf said it best to Frodo,

Frodo: 'I wished the ring had never come to me. I wish none of this had never happened'.

Gandalf: 'So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given us.'


Killahkitten said...

yo yo gibson, who knew you had a blog, I'm really liking your piece. I used to always think similarly about the folk sayingyeah I live life to th full -indeed it was because they were pphysically able to. Unfort CF takes away your independence slowly and you come to a point where you cant just do anything. However, me . . . . I just ket pushing. Me likes this bllog will read more tomoz xx

Tinypoppet said...

welcome back to the blogging world old bean ;)

love, A. Fan.


Woody said...

Gandalf, I agree completely with the "I live life to the full" thing. It's easy to give CF a back seat when you're on 80% LF, less easy as you're LF gets lower and you're ability to do stuff decreases. Shame she wouldn't or couldn't see it from other people WCFs perspective.

I still think you should use the ring to kick Sauran's ass though...