What's this gift of the day nonsense about?

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!

Ta

Doing it for my brother and sisters. Amen!

So here I am once more restarting the blog, but this time, for the first time, making it public. After years of having seen many friends religiously write up fantastic blogs regarding CF, how it affects their daily lives and in many cases their road to transplant, I now feel like time has come to take up the baton and carry it forward myself.

 

So why resurrect my blog? For many it will be the first time you will have seen this blog, it has sat idly for years filling up the interweb minding its own business, sitting alongside the numerous porn sites and cat videos. However in the last couple of weeks I have lost a couple of friends with CF, one waiting for a transplant and another who had a transplant. Both Chloe and Sally are a sad reminder of what a sad disease Cystic Fibrosis is. Not only this, but during the last two weeks I also met the mum of one of my best friends Clare who also sadly died earlier this year. The latter of these three events, whilst sad, was also one of the most fulfilling experiences I've had with CF.

 

Clare and I were transplant husband and wife. We were both on the lung transplant list (the last option for someone with Cystic Fibrosis as they enter the end stage of life). We had only known each other a year or so, but our friendship grew, not because of some unfathomable bond created through the shared experience and recognised empathy that Cystic Fibrosis can create(a bond that I do feel regularly with other CF people) but because of our humour, our view on the world and Clare's 'poo babies'. With CF there are often bowel blockages (inability to poo), these lead to bloating and requires treatment, often as an inpatient and in some cases requires surgery. These were Clare's 'poo babies', an experience I to have had the unfortunate pleasure of having. The bond of shared experience is so valuable in the formation of any friendship in life, whether that be a shared sport, music or even a life experience (parents divorcing). However, a bond that forms what is essentially every part of your daily life and will ultimately lead to your untimely death (all deaths are untimely in my opinion ;-)) is strong. However, this one bond CF does not mean that you see eye to eye with every other CF person on the planet, only that you share an experience that is truly unique and shit. Clare and i not only had that unique CF bond that was formed and held together by sticky mucous and poo that had great viscosity, but we also had all the other ingredients that made a friendship and that made it truly unique.

 

So Clare's mum (we will call her Mummyshark, as that's what Clare occasionally referred to as). Clare had the distinct feeling she was in fact a shark, her own blog was to track her life journey and ultimate return to the sea. Clare wasn't mentally ill, I should state this early on. ;-) She was a quirky thing with a unique sense of humour) came to visit me in Glasgow. Not being well enough, nor confident enough to travel much these days (travel is exhausting and short journeys scupper me) it was ideal Mummyshark coming to Glasgow, as the opportunity to visit her down south was not going to come until after transplant and there is no telling when that would be. Clare's mum showed me photos and told me stories about Clare and it made me feel closer to Clare, it made me miss Clare. One thing that stood out for me was the impact Clare had on people, how she influenced them and also brought them into her life. It not only touched me to see and hear this, but also to see what that meant to Clare's mum. So, while there is much more to say about the life reaffirming experience of meeting Mummyshark and the events that happened that weekend (a half naked dwarf heckling and manipulating his testicles through internal means), what was clear was the difference we all make daily in our lives, the impact we can have and how that changes other people. It is evident the influence Clare had, not just Clare, but other friends I've known too and it is their influence that makes me want to carry this blog onwards. Not only is it their influence but i have an ego that needs stroked, and the possibility that words I write could influence people only comforts that ego , leaving me with a great deal of satisfaction, but also exacerbating the need for it to be stroked.

So it is for my friends, their fine blogs and lives that I now write my own blog on a regular basis (at least weekly updates). I want to show what CF is about, because far too often people see your face and say 'you look well'. Well it's not my face that needs the transplant, it's my lungs. So I will not only tell you my journey to transplant(and what a shit scary journey that will be), but also how CF has affected my life, mentioning the good, the bad and the Ann Widdecombe. All of this I hope will be laid on a warm bed of humour and sprinkled with jokes.

 

The wonderful Clare McCruickshark