I recently read in the paper that the internet makes us over-share. As in, we wouldn't normally tell people all that we do online as we would to peoples actual faces. I guess in some way this probably true of me too. I certainly try not to bore people with endless pictures of the kids, or tales of our worries, but I do all of that in this blog quite regularly (sorry about that!). But on the otherhand, those people who know me will say that I have a long history of over-sharing in real life too (usually when least appropriate), a habit of ruthless, unapologetic truth-telling, perhaps to a fault. So this here follows a tale of how I have ended up with a bladder strapped to my leg and asking everyone who visits if I smell of pee ... (It's no big deal really, I mean, internal organs are just soooo passé, no?)....
In case you are new to this blog, I write it to raise awareness of Cystic Fibrosis and Organ Donation, because to put it bluntly, my 11 year old son has CF, and may well need a lung transplant at some point in his life due to this.
Cystic fibrosis (CF), a genetic condition which he was diagnosed with at 3 weeks old. In his lungs thick sticky mucus obstructs the airways and forms a breeding ground for infection, and each infection causes progressive lung damage. Isaac keeps relatively well on the most part, but the relentless daily regime that CF demands is staggering. At the start and end of each and every day he has to be plugged into nebulising machines to clear the mucus from his chest, and inhaled antibiotics to help manage infection, as well as chest physio (PT) and currently a prescription list 23 meds long. He has an unwanted live in companion (a bacterial chest infection called Pseudomonas) and when he coughs, it's not like ours, it rattles and wheezes and deeply reverberates in his ribs. Otherwise, he is typical cheeky 11 year old, who, above all, wants to be normal and not to be defined by his condition. CF awareness helps raise not only vital funds for the charity we support (the Cystic Fibrosis Trust) but also understanding of this chronic condition, and hopefully reduces the number of really quite stupid questions he is asked (So when did you catch CF? Can't you just take cough medicine? When will you be better?). Raising organ donation awareness we hope will increase the number of people on the donor register, and reduce the number of people on the list for organs (who all too often die waiting due to the shortage).
So, all of that, plus, I really quite enjoy writing. And although I never usually re-read blogs, occasionally I do look back to the same date a year or two before, to see what we were doing then, and so it serves as a kind of journal for me. It also means I can keep family and friends up to date when we are in hospital and I can't face talking.
All that said, this blog is mostly about Isaac and his health. He is almost 12 now, and I have the utmost respect for his privacy, despite my own habit of over-sharing. I would never write anything that he might not want others to know (and I do keep back somethings because of this). When it's about him, it's not my story to share (although if I had been writing this when he was a baby I'm pretty sure it would be much more poop orientated). If I'm not sure, I check with him, and on the most part he is happy for me to write about his health, as my blog is boring, dull and not at all epic or boss, he can't imagine anyone being interested (the girls on the otherhand love it, and always ask me to post pictures of them pouting).
And so, in the spirit of being open and honest; I went in for a simple Op last week, which went fine. Not interesting enough to let anyone know about. However, because I had a general aneasthetic, I had a catheter (presumably so you don't wet yourself during surgery). After the Op, everything was fine, but when the catheter was taken out, I was told I could go home 'just as soon as I could pee', sounded simple enough....
But pee I could not. Not with running water. Not with deep breathing. Not with wetting my neck. Not even with my lovely nurse Marcella doing a little pee pee dance and thanking the gods of the rain. Nothing. My brain has seriously fallen out with my bladder and they are refusing to talk. Never before have I wanted to pee so much.
And so I am now home, with my new handbag. Not exactly the kind I had hoped for, but hell, worse things happen! I am now resting my bladder for a week, and will then have the catheter removed and hope by then the fall out will be over, and my bladder will again talk to my brain. I am assured I do not smell of pee.
Two observations about this whole debacle; Firstly, I have medical insurance with work, so had my Op privately. Since we spend so much time in the bosom of the NHS (CF is so specialist, it's likely that all his care will be with the NHS) this felt really odd to me. It was not the room, the nice TV, or ensuite that got me though, it was the time that the nurses spent with me. I so wish we didn't stretch our NHS nurses so much, and we could let them do the kind of caring they would like to do, given the time. Secondly, when the tables are turned, Isaac is every bit as caring for me as I am for him. He has been amazing, and perhaps this is a good thing for us, we both get to appreciate the flip side of the coin. Only for me it's short term (we hope). I won't have a pee bag strapped to my leg for much longer, whereas he will always have CF to contend with. But we are a team and we will do it together.
This is also a breeding ground for bad toilet humour, our favourite kind.
Have a great day x
