Monday, 4 February 2013

Never Give In, Never Surrender

Another day, another downer but the kind comments, e mails and FB posts I received following my blog yesterday makes me realise I'm not alone and you all have my back during the bad times. Thank you all for just being there.

As you can probably tell I'm not at work today. I did try and spent yesterday evening preparing by ironing my uniform, making up my packed lunch and checking I had change for the chocolate machine. However when the alarm went just before six this morning my mind went 'come on into the shower and then we'll assess how you are doing', while my body went 'no way, are you mad? I'm staying put'. Today the body won as try as I might I just could not get out of bed. Aside from feeling pretty miserable about yet another set back, and of course the infection itself, I'd had a really bad night. For a start I just could not get warm and ended up getting up around one to put on my dressing gown and some old rugby socks. It helped but not by much and I snuggled as close as I could to Peter for some warmth. He responded by throwing the covers off because he was over heating, sometimes you just can't win. After a fitful couple of hours I was suddenly wide awake at 03.44 precisely. I have no idea what woke my but I can say that, disappointingly, it wasn't the phone. Trying to get back to sleep after that was hopeless so I just lay there listening to the stereo purring of Tarmac and Smirnoff as they forgot their differences for once and slept soundly at my feet.

To be honest today is more about looking after my mental health rather than the physical, which does seem to have improved since Saturday. I just couldn't face dealing with other peoples problems or my little tag team today.

The trouble with an illness like PH is that everyone tends to focus on what it is doing to your body whilst forgetting completely the effect it has on your mind. Living with a terminal illness is stressful.

Everyone has stresses in their lives, we worry about our jobs, money, our kids and a million other little things that make up life. For someone with a serious illness you have all that plus all the additional stress being ill can bring. First you have to deal with being told you are dying. Then there are all the meds to get used to, the gradual but relentless changes to your lifestyle, the humiliation of having to carry machinery around with you, just to stay alive. You worry about how you will die, will it be quick or long drawn out and painful, you worry about how your family will cope without you. Then you worry about letting people down when you can't make it into work, holidays or visit to the cinema have to be cancelled at short notice. And all the time your world is shrinking around you.

Regular blog readers will know that 2012 was a particularly stressful time for me, November and December were particularly bad. Not only did I end up in Papworth on my birthday for transplant assessment but I also had a cancer scare that resulted in surgery and a wait for the all clear. Then there was the bout of flu and accompanying chest infection that rendered me bedridden for most of December. I recovered just in time to go into work on Christmas Day and then I was thrown into the busiest Christmas ever all the time jumping when the phone went and praying it was 'the call'.

2013 has started with stresses of it's own. There's the change in shift patterns at work, though admittedly it has worked out better for me than I expected and I quite like the shorter days. And then there is the stress of being 'on the list'.

When you first get put on the list you are convinced that the call will come almost before you leave hospital then as the days and weeks pass reality dawns that you could be in for a really long wait. Every time the phone rings at a time you don't expect it too, i.e. late at night or early on a weekend you jump thinking this might be it only to have a tiny piece of hope chipped away when it turns out to be another marketing call.

So is it any wonder that sometimes it all gets too much and you just want to shut out the world and wallow in your misery for a while. Someone said that I must remember that tomorrow is another day and I'll feel so much better. Yes but I could also feel so much worse.

One thing I do know is that I will get my mojo back, it could be tomorrow, it could be next week but it will come and when it does I'll get back on that horse and face down my problems because I don't give in.