Clouds drifting by

1 Have there been any periods in your life that could be described as being chaotic?

Yes, now. Dealing with having carers is pretty awful. I have 4 calls a day and no guaranteed time for any of them.

My morning call is around 7.15...unless someone's called in sick, in which case it could get to 8am. One time, it was almost 9am before they arrived. My lunch call is usually between 11.40 and 12.30......unless something's gone wrong. My tea call is supposed to be around 4.15 but it can be any time from 3.45 to 4.45. If the carers have decided to do the run in a different order, my call can be any time up until 5.30. The one time it was 6.30 seems to have been a one off, thankfully. My bed call was 9.50, then it became 10.30, but now it tends to be 9pm.

The district nurse is now coming 3 times a week (Mon/Wed/Fri) instead of every day, but they can turn up any time at all. Or not turn up because they got too busy but forgot to let me know.

I feel like I spen all day waiting for the repairman. It drives me insane and there's nothing I can do about it.

*takes a breath* What about you guys?

As you guys might remember, I have 4 layer compression bandages on my lower legs. The top layer of my compression is a bandage called Koflex that's brown and rather sticky. The nurses usually cover my legs with a layer of comfi-gauze (a thin, stretchy gauze bandage) to stop my legs from sticking together (Koflex to Koflex) when I'm in bed.

The districtnurse didn't have any spare on when she came on Tuesday, so she put on a layer of Surgi-fix (a stretchy, crisscrossed mesh) instead. It didn't work. I really struggled to move my legs in bed on Tuesday night so I got the carers to duct-tape a pillowcase over one leg last night. That worked!

Today, all my carers have been saying, "Is that a pillowcase? Why is it duct-taped to your leg?"