Monthly Archives: July 2007

So I’m back at the flat now, enjoying a wonderful, 2-person existence with K and my own space with everything in easy reach.  (2-person existence meaning K and me, not 2 versions of me in a crazy Jekyll & Hyde kind of way).

Before I left the flat, we’d been trying, ever-so-hard, to sort out our internet connection, which had been thrown into disarray when we discovered that neither my nice new, shiney Mac Pro, nor K’s nice, new, not-quite-so-shiney lap-top with Windows Vista-poo, would work with our current Broadband modem.

Don’t ask me why – it’s some kind of computer conspiracy between Microsoft, Onetel, PC World, Maplins and computer telephone helplines that would take years to unravel if anyone ever bothered to, which they won’t because no one understands enough about things to unravel them enough to make sense of anything to work out who did what to whom and when and why and what.  Ish.

It just doesn’t work.

So, I went out and bought the doofer they told me to buy, thinking I was being very clever and techie and would sort it all out in a flash.

Sadly, the one I bought was, frankly,  poo.  Sometimes in life, you get what you pay for and what I paid for was a cheap piece of rubbish that no one on any helplines had heard of, not even the people on the helpline for the company that made the modem product that I’d bought.

So I took it back.

Fast forward through a month of not being at the flat (see other post) and I arrive back at the flat knowing exactly what I need to get and roaming the internet to find it, order it and get it delivered.

And today, it arrived!

So I leap (stumble) out of bed and run (walk) to the study, throw (plonk) myself down in the chair and busily set about slotting (ramming) cables into the various slots they may or may not fit into.  I do all of this with the authoritarian air of someone who knows exactly what they’re doing.

To my delight, I turn on the computer and nothing explodes.

So, I jump into the software settings gubbins, which I now know inside out having messed around so much trying to make the other lump of rubbish work.  I’m entering long strings of complicated numbers and letters and passcodes – sorting my DNS from my IP from my PPPOA and other wonderful collections of letters.

And my computer loves it!  “Connected,” it says.

It lies.

Nothing will come up on the web browser.  Nothing doing.  The light on the modem is red. I’m no rocket scientist, but even I know that a red light on a piece of technology is never a sign that things are all fine and dandy.

So I phone Apple customer support, who have up to now proved to be consistently clear, concise and totally helpful on all related matters to my purchase.  Indeed, they are again.

We run through a number of things and they tell me that everything on the Mac is working perfectly and all the settings are as it should be.  They suggest I contact my service provider as it’s most likely that a) they haven’t activated my account or b) the network is down.

I hang up the phone despondent.  I’ve been on the internet all morning on my old computer on the same account, so I know none of those things is true.

I phone the modem manufacturer’s freephone customer service line.  It’s no longer in use – it’s now an 0845 number, which I’ll have to pay for.  Nice.

I talk to a nice man in Delhi.  He tells me everything on the router is working fine.  The red light is because my Username or password is incorrect.

I hang up the phone despondent.  I check and recheck the username and password I’ve entered.  It’s all correct.

I phone Onetel customer service.  I may or may not be talking to exactly the same bloke I just came off the phone with.  He tells me I need a load of settings to set up the modem.  I tell him I have them and I’ve done that, but he takes 15 minutes reading them to me anyway.

He starts to read me my username and password.  The username is 32 characters long and he’s spelling it out letter by letter, then using the phonetic alphabet with it.  I cut him off and reel it off to him from my notes.   As I get to the end of the line of letters and digits, everything slips into a momentary pause as a sluggish dawn swims smugly across my consciousness and I realise that the 1 I’ve entered as the 27th character is, in fact, an L.

If anyone wants me, I’ll be the one in the corner with the pointy hat on my head.

It had been my intention to sit down at some point and fill in the blanks of the past months with an epic, multi-post entry to tell my tale up to today (or up to whenever I got around to posting).

Luckily for all of you guys who are still bumbling across the site in the vain hope for a new entry, I’ve decided against it.

There are many reasons why I should and shouldn’t give up a full account of the last 4-5 weeks during which time I’ve managed to post a grand total of 0 times.

Over the months since I started this blog just before Christmas, I’ve shared a lot of the ups and downs, highs and lows, peaks and troughs of everyday life and tried to use this site as a tool to force myself to keep a bit of perspective on the whole thing – life in general and my health.  Sitting here now, after quite possibly the worst month of my life, it seems strange to say it, but I want to focus on moving forward more than raking over the past, even the not-so-distant past.

So, what you get is the shortened, edited, cut-down, weight-watchers version:

At the end of May, after my birthday, I was running pretty low, energy-wise.  In the middle of this low, I managed to pick up a cold.  Fighting the cold was one thing, but as is almost inevitable with CF, the amount of time and energy my immune system was expending  on fighting the cold virus meant I had no defences left to look after things in my lungs.

Before you could say, “seriously guys, I don’t feel very well,” I had collected myself a roaring infection and an inability to extricate myself from my bed.

After a bit of family decision making, I returned to the warm and caring centre of the family fold for my Mum to switch back to nurse/carer role in looking after me 24/7.

Even that wasn’t enough, though and within a week I was on the ward  in Oxford, having spiked an impressive temperature and gathered the mother of all infection markers.

Levels of infection in the body are most easily assessed by measuring the levels of C-reactive Protein (CRP).  Don’t ask me what it is, I just know that it should, in a normal person, be in the 0-4 range and that in PWCF it’s frequently around the 10 level, as we are often fighting low-level infection constantly.  Anything over 10 gets worrying and 20-30+ is cause for proper concern.

When I was admitted to the ward, I was told that the labs doing my bloods had stopped their CRP count when they got to 160.

Now, while I should be monumentally freaked out by all of this, I still can’t help but feel slightly short-changed as my good friend Emily once managed to mark up an impressively gob-smacking score of 400 – but they obviously like her enough to keep counting and not just give up when they get past “bloody high”.  Oh well, Em’s always done things more impressively than me, anyway.

In the midst of all this, there were lots of antibiotics being hurled around, different combos being tried here and there and various other drugs being tossed in my direction.

Most upsettingly for me at the time was being put onto a short course of steroids, which, at the dosage they were giving me, all but removed me from the active transplant list – my one chink of light in a world of enveloping blackness was being blotted out and I had no control over it.

June has been a true nightmare month, in every sense of the word.  From beginning to end I was struggling through every single day and at times it seemed like there was nowhere to go.  It is, without doubt, the closest I have come to meeting my maker and there were times over the last few weeks when I have honestly believed that someone was waiting outside the door with a conveniently held bucket for kicking.

One of the reasons I can’t take myself into much more detail than I already have is that a lot of the last few weeks is already a haze, my mind working it’s magical ways to blot out the middle-ground of strife and tedium and leaving me with but a few key moments lodged in my brain.

Thankfully, most of those key moments are the ones which give me the spur to push onwards and upwards and to keep fighting for my transplant.  There have been times in the last month when I’ve been in a darker place than I’ve ever been, but the knowledge that it’s possible to pull back from that and to recover to some semblance of normality again is reassuring beyond expression.

That’s not to say life is all sunshine and roses now – there’s a lot of things which are still a struggle and my world can still be a lonely place at times.  But I’m still here, I’m still fighting and I’m still able to laugh – at myself and others.

It’s been fitting that over the course of my last battles I’ve not managed to post anything on here, because smiling was the last thing on my mind through most of it.  Now, though, I’ve got something of my mojo back, and I’m revving up for the run-in to my new life.

Bring on the lungs, baby, I’m ready to roll.