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.