You know what ? Life isn't fair

“I have cystic Fibrosis”

“Oh I’m really sorry about that”

“ Oh don’t be, you didn’t make it”

I’m not gonna lie, sometimes I use CF for sympathy –usually with dougie when he wants me to go a big walk, or cycle or em make tea or ha ha ha he never buys it.

Here is how I like to see it . . .

I was in a great job, I was in a great place in my life, I have wonderful folk around me, but I have left it all given in my notice etc to come on this trip – Big wows 3 months that’s not long I hear you say. . . .

Well actually I don’t look for change too often, I like the way things are, but I also have been given a very double edged gift from birth.

The gift being -  I always knew time was precious, I never left argument’s un solved,  I forgive easily and though folk say never forget those who do you wrong – I do. The way I see it, I don’t have time for stupidity, stupidity being catty fights, stupidity being worried about the small things, stupidity being not grabbing life by the horns and doing the best bull dancing you can do.

Don’t get me wrong, sometimes I do divulge in stupidity, but I’m often reminded by something that I don’t have the time.

None of us truly have the time . . .. . . but I am fortunate that I am aware of my time, I don’t know when it will run out, or when it will become very obvious that the things I want to do are being taken away from me slowly or quickly ,but I am aware that this TIME isn’t infinite.

At the moment I have a couple of people within my life that are going through hell, no need to name names, but if ever there was a truer word spoken it would be Kate Bush’s “Running up that hill”, knowing only too well what end stage lungs are giving up the fucking ghost is like I wish I was able to give them some rest bite, to share in their struggle, to hold them up for a while and give them the opportunity to walk without thinking about every single bloody breath.

I never felt too much guilt after tx and I don’t know if that’s a good thing or a bad thing? I felt guilt when Nicola died but now I am feeling a whole lot of guilt – a whole lot of why me’s? A whole lot of what the fuck is happening.

I sometimes wish I had religion to fall into, to whole heartedly believe that god has a plan for the people I care so much about, but I don’t. I’m spiritual, I believe we are not finished when we pass from this body but I don’t have any belief after that.

I struggle to believe in a higher power who would allow this world to go to the pits, who would allow babies being born so ill, who would allow people to suffer so incredibly badly.

I know a number of you will strongly disagree, there is a GOD, he does this to teach us, to let us learn, to be better people. . . . .whatever . . .

I’m just jealous that I can’t have those feelings, those definite thoughts and beliefs.

Just after being listed for tx, when I think it truly sank in the situation I was in, I awoke one night in Dougies bed and was completely inconsolable, I sobbed my heart out for my family, for my friends and loved ones and more importantly and selfishly for myself.

I want to be able to say something to reduce the anxiety, the pain, the horrifying thoughts that dominate their minds,  but I don’t have any words except I know how it feels. And what can they words do?

This is a depressingly sad post but more often than not, this is the life for CF, for lung disease and for dealing with an illness that you know most probably will kill you.

Ah pish . . . . .who’s got a funny story to share???