Friday, 8 February 2013

Wearing The Face That She Keeps In A Jar By The Door

Oh for goodness sake! Why can't I just be free of infection, just for a couple of weeks.

I'm back at my GP's today as I am on my last antibiotic tablet and my chest still feels as though it is full of yuk. The worrying thing is I'm not coughing so I'm wondering whether I've actually got the old pluresy problem back again. I'll soon find out my appointment is at eleven.

My PH center had a bit of a panic when I told them what had been going on and wanted me to drop everything and go straight in 'for tests', staying overnight. Well as you can imagine that was rebuffed immediately. I know when I'm in serious trouble and something has gone wrong so didn't feel an emergency admission was necessary. I do think my Flolan needs adjusting to take in my new weight but everything else is OK. We have agreed to stick with the clinic appointment in two weeks but I've promised to get in touch if things get any worse. An uneasy compromise but there was no way I was going to spend any time in hospital unless I really needed it.

I was asked yet again yesterday whether I had a date for my operation.

To be honest I'm getting a bit sick of having to explain things. Do people really think they have organs stored away in fridges? Apparently so. Hopefully the organ donor campaign starting on Monday will educate a few people and I won't get asked anymore.

I was also asked how I did it, how do I come into work each day with a smile on my face and remain cheerful no matter what life throws at me. The question ended with 'because I couldn't do it.'

I don't think any of us know how we will react to suddenly being really ill. It is not a scenario that we can easily imagine, who wants to? If anyone had told me ten or even five years ago that I'd be relying on a machine to keep me alive and desperate for transplant I'd probably have laughed in their face because it seemed so ridiculous. Either that or I'd have made some glib remark about killing myself before then. So how have I done it? Well the easy answer is because I have no choice in the matter. I can't wake up one morning and say 'well I've had enough now, from today I'm going to be well'. Believe me I wish I could. The choices are stark. Stay at home and wallow in my misfortune or get on with living as full a life as possible and when the going gets really tough slap on an even bigger smile. Sometimes I feel like the biggest fraud ever because my outward appearance bares no resemblance to how I am feeling inside.

Recently the mask has slipped a bit and, despite protesting that I didn't need counselling, I've found it does actually help. You feel wary and a bit silly at first but getting everything out and actually having someone tell you that all the feelings of anger and fear are normal is very reassuring. My counsellor actually told me that she'd be more worried about me if I didn't go off the rails occasionally.

In the news, the horse meat scandal.

Fortunately finding horse meat in your burgers or ready meals isn't dangerous but it brings to the fore the unpleasant thought that, unless we've made these things ourselves, we don't really know what we are eating. I've long thought that relying on what the manufacturers put on the box is just what they want us to know about. My suspicions were raised when one day I read the ingredients on a ready meal while it was in the microwave and found thy only added up to 97% of what I was eating. I still wonder what was in the outstanding 3%. Since then I've relied less on shop bought stuff and made things myself. I much prefer to make a massive lasagna and freeze half into individual portions than by ready made. Where I can I make up my own sauce too.

There are no health reasons to worry about eating horse meat, I'm sure all the proper safety precautions were taken with horse as for beef, lamb or poultry. What worries me is the breaking of trust. If horse meat gets through what else is being put into our food that we don't know about. Also by not telling me what is in a product I am being denied a choice. I might well still choose to eat a burger with a small proportion of horse in it but I don't want to do so in ignorance, I want the choice to be mine.

Well my student paramedic is home and demanding food so I'd better go.