Funny Episodes (1)

So..where was I? Yes, I was about to go on about my collapsing and my very bizarre experiences.

The first of these 'funny do's' happened a year and a half ago. I was sitting on the couch watching the quite amusing 'Tropic Thunder' on DVD with a friend. I started to laugh during the comedy (as one is supposed to), I coughed and felt a funny feeling in the left side of my chest. I started to feel weird and tried to put on my oxygen, but my hand couldn't put on my oxygen properly. My friend put on my oxygen for me. My legs and arms felt like they had pins and needles and my vision went blurry. I could still see, but there was a mirage effect. The vision effect was not distinctive to one eye, but to both in the same place. Apparently all colour went from my face. My legs felt cold and dead. I asked my friend to call an ambulance, I truly thought I was on my way out.

It took a couple of minutes for the ambulance to arrive. I was a tad confused as they asked me question, but I think I was able to respond adequately enough. They checked my heart, my oxygen sats and my sugar levels and all were fine. During the time they were there I started to recover. Feeling returned in my arms and legs and my vision returned. All seemed OK and the ambulance men asked if I wanted to go to hospital, I declined. I honestly felt fine again, it was all very weird.

Anyway, later on the next day, just as I was doing my late physio I had another similar experience. However, this time I tried to get to my oxygen concentrator and switch it on. Whilst attempting to get to the oxygen my symptoms got worse, so much so my vision went blurry and I lost feeling in my legs and collapsed to the floor. I couldn't see properly, I couldn't move arms and legs and I felt really cold. My friend once again got my oxygen for me and made sure I was kept warm until I recovered. I've never lost consciousness during these episodes, I've been quite with it. Anyway, after these two episodes over the weekend I thought it was best to go to the hospital on the Monday.

Since this is a story covering almost two years I'm going to split it into two. This part will cover the first year, the next instalment the more recent stuff, including a diagnosis. Anyway, where was I? Yes, hospital. So to hospital I went. After initially being told to go home, I asked for a second opinion as I was quite concerned by this occurrence. I was admitted into hospital for a week, then checked my heart, brain, spine, lungs and found nothing. From a heart attack, to a stroke, to a severed spinal cord, many options were explored. I saw a neurologist who confirmed it wasn't a fit of any kind. In the end it was referred to as a syncope related episode, meaning, It was a fainting episode. However, that wasn't the final diagnosis and it wasn't until a year and a half later I had another diagnosis.

Until next time...

Da Family

In recent times I've been watching a few of the BBC series 'Who do you think you are?'. To be honest I've been watching a lot of the old episodes and therefore been playing catch up. Watching the likes of Stephen Fry, David Tennant and Jeremy Clarkson discover about their family has made me wonder about mine. Not only have I wondered about the history within the family, but I've also considered the genetic history within the family. As some of you may or may not know, CF is a genetic condition. The gene is recessive, therefore individuals can carry the gene with no affects. It is only when two individuals that carry the gene decide to have offspring that there is a 1 in 4 chance that their child could inherit both copies of the gene. If a person has two copies of a CF gene, then they have CF. So my thought regarding my family tree are, where did my copies of the CF gene come from?

I have the most common CF gene, Delta F508. I know what gene I have, so if given DNA tests I could confirm which grandparents my CF gene came from. Whilst it may be possible to identify whether my mothers, mother carries the gene, identifying the gene in my other grandparents may not be so simple. Sadly all my other grandparents are deceased. Whilst digging them up might have been an option, it is one I doubt my family would have accepted, even in the pursuit of scientific knowledge and understanding, something I'm sure my Grandparents would approve of. All my Grandparents have been cremated, so I can keep the spade in the shed for now and I can also avoid prosecution for desecrating a grave.

So I'm now wondering whether second cousins carry the gene. Trouble is, many people only get tested to see if they carry CF if they are planning on having children. At present not all my relatives are thinking of having kids, some are still teenagers, so I can forgive them for not trying. I don't think it would be morally responsible for me to encourage them to have sex or to get pregnant. I don't want to be known as the perverted relative who promotes underage sex.

Anyway, this family tree and the origins of my CF gene are something I want to explore more. Where, if anywhere, my intrigue leads me, who knows?

On a separate, more daily issue, I'm off to hospital today. Had a couple of mini 'CF do's' in the last few weeks. I will explain what a 'CF do' is in my next post. To be honest, there is no real definition, neither in terms of my episode or in terms of a 'CF do'. I'll explain more next time.

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.'

Sven Goran Who? People can be annoying. Am I a performing monkey?

On Friday I managed my first football team and whilst the result wasn't perfect (we lost 7-2) the team we were playing against were a proper team that knew each other, whilst my team was a bunch of mates and randoms just stuck together. I even got a shot as goalkeeper, but being 5'7"(8") I haven't quite got the height for a keeper. I could barely touch the crossbar while on the goal line, not really ideal for a goalkeeper. Yes, I know I must be a dodgy manager to put a dwarf in goal, but my first choice keeper was having a nightmare and was begging to be taken off. To be honest, I don't think football management is a realistic career move for me, at least not yet.

On Thursday I played footy too. I play at my local sports centre, I say 'play', I tend to walk around the pitch or go in goal, there really isn't any running involved. When you have lungs the size of a packet of crisps it's very hard to run, in fact just to survive the match I have to take pain killers to dull my coughing reflex. Oh....how I love cocodamol! Yes, I know it's addictive, but I only take it for footy - no need for rehab.....yet!

That's one rubbish thing about CF, none of my drugs have a decent street value. I guess I could sell them to third world countries, but I think the large pharmaceutical companies are already dominating that market and shafting various countries in the process. Oooh....I'm being all political.

Anyway, I was planning on telling you about Thursday. As I was saying, I play at my local sports centre. At the sports centre there are specific disabled car parking bays, these are often wrongly taken by non-disabled people. Due to having poor lungs I find getting around tough at times, especially when ill and because of this I have a 'disabled blue badge' which entitles me to park in disabled bays. Anyway, as I was approaching the disabled car parking bays there was one bay left and a car pulled into it right in front of me. I didn't' believe the car in front had a disabled badge so I got out and had a conversation with the driver. There were three guys in the car, I have numbered them man 1=driver, man 2=man2, man3=man3

(me) 'Are you dropping off or parking'

(man1)'I'm parking'

(me) 'Do you have a disabled badge'

(man1)'no'

(me) 'Well I do, is it possible for me to have the parking space?'

At this point man1 looked me up and down searching for a visible disability.

(man1)'Is the badge yours???'

(me) 'yes'

(man1)'ok'

Man 1 then moved his car, but his two friends man2 and man3 stared at me while I parked. When I got out my car man2 and man3 were standing there, but started walking away. Man2 then spoke,

(man2) 'you don't look very disabled'

(me) 'I've got cystic fibrosis'

(man3) 'well I hope I don't see you running on the pitch'

Some people can be annoying. Whether or not I had been there to ask for the space, these grown men shouldn't have been taking a disabled car parking space in the first place, it makes their questioning of me and my health even more deplorable. Some people!

Sometimes this is the problem with CF, at first glance there aren't any visible problems. On the outside people with CF can look quite normal and I think people find it hard to comprehend that a young person who looks well can actually be ill. For example, on a bus or train there are seats specially set aside for those who need them. If you see an old person, you can distinguish them by the wrinkles on their face, the grey hair or the smell of pee. Pregnant women we can identify by the massive growth on the front of their body and haemorrhoids , but with CF there aren't visible signs of illness. However, if you saw me doing my physio, having a coughing fit, nebulising or with a tube down my nose you might think there was something wrong, it's just I try and keep those things in the home place.

Recently I have done some stuff in the media regarding CF. This has involved being on TV, radio and in the newspaper. For my radio appearances they try to broadcast my cough, for newspapers they want to see my collection of drugs and for TV they try to broadcast my cough and show my huge array of drugs. It can sometimes make you feel like a performing monkey, but sadly performances are needed so the general public realise that I have CF and that there is a problem with me.

All of this has just made me wonder about labels, ones we have placed upon us and also about labels that we choose to display. It made me wonder, are labels good or bad? We use them when we need them and disregard them when we don't. I don't want to be known as a disease, but at other times I talk about CF and use it so people take notice of what I'm saying. I guess it made me think about the contradictions within everyone and more specifically in me. On the outside I look well, but yet I'm not well. Then there are times I want people to know I'm unwell, but yet I don't want to be different and therefore don't want to be known as 'ill' and neither would I want to be known or defined by CF.

I don't know if what I've said is clear, i just hope you get the gist. Anyway, my brain is starting to get mushy, so I'm gonna stop thinking.

Substantial post?

I may as well get something on the way here, something that isn't so vague as the intro, something more substantial about me. Anways...It's 2pm and I still haven't washed. This isn't a habit of mine, but it's quickly turning into one. I can feel 'the beano' green cartoon lines of stench radiate from my body and it's not a pleasant feeling. Having said that my cat (Amie) is particularly smelly of late, so I don't feel so bad. Everything is comparative and frankly I'm not as smelly as my cat. However, everyone can put up with their own body odours better than they can others and so maybe I'm smellier than I think. That's not to say that ones own personal odours don't occasionally lead to regurgitation,of course they do! I should point out that cats don't have the same kind of luxury when it comes to cleaning products, I have face wash, shower gel, deodorant, toothpaste etc and she just has a tongue. So it really is an unfair comparison, but for the moment it feels like I'm not such a slob.

I've done my physio this morning, so at least that's something. For those who are just dropping by I should quickly alert you to that fact I have a condition called Cystic Fibrosis (CF), you can read about it here: http://cftrust.org.uk Overtime you will see that CF plays a role in my life, ultimately affecting each day, from the everyday logistics of planning a day to helping form the distinct perspective I have on life and the events around me.

So what have we learned from my first 'substantial post'? I have some sort of health condition and that I seem quite keen to talk about body odours and body functions. I think I've managed to sum myself up pretty well. Take care and pop back soon.

It's only the beginning

Hello!

So here it is, a small but momentous moment for the literature world. Here is an opportunity for me to publicly voice my ill judged misgivings and to demonstrate my poor comprehension of the world around me, how could I pass up such an opportunity?

This is also a chance for some to catch up on what I'm doing without having to go through the pain of talking to me face to face. Follow the ups, the downs and the plateaus, from the vaguely interesting to the the not so interesting, it might or might not be here in my blog.

Anyways, thanks for dropping by. I only hope my blog can be as interesting as some others i've read.