So for those on Facebook this will potentially be your second visit to the wonderful realm of my wonderful world. Come, be seated and no fidgeting! I fidget . . . feel free to fidget.
For a while now on Facebook I've been posting a 'gift of the day' post. Some of you may have found it interesting, others of you less so. So why have I done this? Well . . .and this may sound like the start of a sermon, but it was about being thankful for what we have in life.
I think the first gift came from my friend Elaine, a small Lego R2D2 she picked up from her jolly jaunt down to LEGOLAND. Whilst it was a small thing the thought was lovely. So I posted it as 'gift of the day' just to show my appreciation. It may well be Elaine stole it, probably from a small child, but I fortunately can't be sure of this and can therefore only receive it under the impression it was legitimately paid for (which I once again would like to say I doubt). However, this small gift made me think about all the things people do for me on a daily basis, whether that be buying me something of various value (preferably high) or doing me a favour. Too often in life people see what they don't have, not what they do have. I find it in a morbid way quite amusing when people say on reflection of their own life, 'well at least I have my health', sadly that is something I can never say and will never have the chance to say. However, that doesn't mean things couldn't be worse either. So what do I have to be thankful about?
One thing about approaching transplant and i notice this more with my own circumstances now that I'm waiting for the call, is how people with CF fool themselves into thinking everything is ok, that we are ok. The truth is in medical terms I'm stuffed, I have lost a right lung due to a lung collapse, my oxygen levels barely get out the 80's and I believe technically I am now in respiratory failure. Yet despite these blatant facts, and even the continued appearance of 'looking ok' (brothers and good friends would all agree I am disfigured beyond any surgical intervention) I am ill, i do need new lungs and soon! However, I still continue to fool myself and others to thinking things are fine, I can cope. The truth of the matter is I've adapted, I've accepted a lesser quality of life to my peers and deemed it as acceptable. As some might say, making do of a bad situation.
That's what I find many CF people do, they adapt and then fool themselves into thinking that the lower quality of life, the lower physical activity and capability are all acceptable. So after many years of adapting their lives, ultimately sticking to within the restrictions CF places upon them they discover a norm for themselves. This 'norm' isn't normal, purely an adjustment. So when Consultants approach them and say they need a transplant they are surprised, as to them their quality of life is still good. Whilst I've been transplant watching (keeping an eye on my medical facts and figures) I am just as guilty of this. Despite needing oxygen most the day i still sometimes think 'I can manage like this'. The truth is I can't, I've adapted. With two other transplant approaching friends dying in recent times, it is only too apparent that you can't adapt forever.
While there is a deeply negative aspect to this post, the point is actually that people with CF often face the treatment and changing lifestyle with optimism. Having said that, I'd suggest this occurs on a subconscious level. Adapting, accepting and yet hiding the treatment to appear to be as normal as possible. Ultimately grateful for all the small gifts life can give, the ability to get out and about, the desire to go places and the chance to just avoid being in hospital. They work with what they've got and push the quality of life they can have to the limits. This isn't always the case, but I know from the friends I've had and have, this trait is there to be seen again and again. So people, be grateful for what you have. I was at a christening on Sunday, my niece Shannon. Anyway, it's rare I attend a church and it's rare i hear a sermon. This is my sermon and it has been delivered.
One thing I should add about 'Gift of the Day' (GOTD)is that there has been a profound benefit to it. At first it was about being grateful for the small things in life, but then people saw my posts and started giving loads of stuff. Brilliant! What was supposed to be about looking at the things we take for granted, soon turned out to be a capitalist project of mine. Day after day gifts arrived in the post, sweets, DVD's, all sorts. It appears I am an unwitting evil genius. So please, keep sending the GOTD and I will post them up on Facebook. Giving is better than receiving, or at least that's what Uncle Santa says. ;-)
Now to bring you all back for next week's instalment I will give you a brief description of what is now known as 'Dwarfgate', a comedy gig where a dwarf stomped on stage and revealed all. I will tell you all about it next week. Now go give a gift, go sign up to the Organ Donor register. One day I will post the ultimate 'Gift of the day', my new lungs!