Wednesday, 29 January 2014

Sometimes Life Happens

Woke up this morning feeling a lot more relaxed than I did yesterday. The last few days have been an agony of indecision. Every night before bed I'd sit up wondering if I felt well enough to go into work next day. Then after deciding no I'd spend the whole of the following day wondering the same. Of course there is a huge difference between sitting around on the settee all day, or a quick trip to a shop in a wheelchair, to having too be at your best for eight hours. Now that I've been signed off the decision has been taken out of my hands and I can relax. After all if a doctor says I'm not fit to work, then I'm not fit to work, right?

The difference between an hour's trip to the supermarket in a wheelchair and working eight hours was pointed out to me by a very wise woman after I stressed out about going shopping during a period I was off sick. Her response was 'well we all have to eat. And how are you going to know if you can cope if you don't test the waters?' This has become my mantra and now I don't feel guilty if my husband takes me out to buy fruit or just a trip to get me out of the house. I don't take time off unless I'm really poorly so I'm damned if I'm going to be made to feel guilty when I do.

The other mantra I live by is the title of today's blog. I was told this on the day I was put on Flolan.

My wonderful specialist nurse, Carl, told me that although I had to be careful there would be times when life just gets in the way and when that happens the thing to do is just not panic. So today, when I slept through my alarm, and finally woke at nine, then read the papers before ambling to the bathroom for a soak and then realised I was three and a half hours late changing my cassette, I didn't panic. Thankfully I'm on a low dose so the cassette hadn't run out, I'm sure the alarm would have let me know if I did.

This is not the first time I've made a mistake and it definitely won't be the last. For those of you who are on Flolan or similar IV drug, here is a list of what I've done wrong over the last two and a half years.

1. Forgot to change cassette for a whole day.
2. Showered without covering the connector (at least once every couple of months)
3. Dangled the connector in the bath.
4. Dropped the machine in the bath. (Yes, when full of water)
5. Dropped the machine onto concrete from a great height.
6. Shut the line in a drawer, door, car door.
7. Caught and pulled the line around a door handle, chair arm and my foot.
8. Been half way through drug prep and realising I haven't got gloves on.
9. Forgot to sterilise the bottles with alcohol wipes.
10. Trod on the line more times than I care to remember.
11. Filling the cassette with buffer solution and then finding a full bottle of powdered Flolan still sitting on the desk.
12. Stabbed myself through the sterilised gloves with a needle full of Flolan. (This happens quite frequently)
13. Split the line twice, with no idea how so can't prevent it from happening again.
14 Dropped the line just as I was about to connect it to me.
15. Melted the line by accidentally shutting it in the oven door.

I could go on but it is probably getting a bit boring now. As you can see life has got in my way quite a lot. Maybe I'm unusually clumsy. Maybe it's because I refuse to change my whole lifestyle to accommodate the line. The line lives with me, I don't live with the line. Or maybe it's my subconscious way of rebelling against it. Who knows? All I know that despite frequent attempts to (unintentionally) destroy it, the machine whirls away day in, day out just keeping me alive. I should be grateful but all I want is to see the back of it as soon as possible.

Despite my vivid dream about Stacie getting her call, and the premonitions of several others who know her, nothing has happened yet. I can't help feeling though that it will and very soon.

Today I'm feeling a bit better again. The addition of another antibiotic hasn't really had time to work properly yet but I did go through the night without coughing, probably why I slept through change over time, which was a real bonus for both of us. We both feel less spaced out and more refreshed this morning. Hopefully by the weekend it will have really kicked in and my chest will feel better too.

My Ebay experience is proving fascinating. The items I have put up for sale are attracting a lot of interest and I'm getting a lot of messages with weird requests. Peter, who uses Ebay more than I do, says to stay well away as they are probably scammers. Some are obvious but others are quiet subtle. It's easy to see why so many get caught out.

In the news I was delighted to see adverts on TV last night for the Six Nations Rugby Tournament. I absolutely love rugby and of course support Wales whole heartedly. With a bit of luck they will keep the title but it's going to be hard fought.

Also in the news, practice has started heralding the approach of the Formula One racing season. Another sport I'm an avid watcher of. It hasn't been a good start. Mercedes crashed, Red Bull had unspecified problems and the McLaren's wouldn't start. Let's hope that isn't an omen.

So lots to look forward to over the coming weeks and months.

On the downside Michael Schumacher is still in a coma and hope continues to fade. I notice the Mclaren cars had 'keep fighting Michael' on the side pods. I suspect that's a sentiment shared by everyone who loves F1.