Wednesday 8th December 2010
My urine was slow and I had pain in my bladder.
Thursday 9th December 2010
3.15 am I awoke in extreme discomfort.
6.20 am My carer got me out of bed. The night bag had very little in it but what was there, was dark orange and pungent.
8.30am My leg bag was empty. I urinated from my urethra. (In the hoist, all over my carer. Sorry E!)
11.00 am My carer changed my leg bag and noted shards of a crystallized substance on the catheter.
Friday 10th December 2010
The catheter was still blocked. I emailed the Urologist who expedited my catheter change to next week and recommended that the District Nurse effect a bladder wash in the meantime.
I was really impressed with the Urologist's response. Email ftw!
My carer made an appointment for the District Nurse to call the next day, for an am appointment.
Saturday 11th December 2010
The District nurse arrived at 12.23pm
She introduced herself as K? (I didn’t quite get her name.)
She came in and took her notes out. She read aloud that I have a peg feed! I pointed out that it is a rig not a peg. You will recall the trouble that I have previously had about this issue. (Rig Problem)
She seemed to ignore me so my carer interjected, repeating what I had said.
My voice is weak and muffled at the best of times, so it is perfectly possible that she didn’t understand me but my carer was clear. Even if it is difficult, I would rather people speak to me , not directly to somebody else about me. I prefer to communicate through my eye gaze computer but with a little patience my speech is intelligible, it is just quite tiring for me. I could not get the district nurse to pause for long enough to direct her to my eye gaze.
My voice is weak and muffled at the best of times, so it is perfectly possible that she didn’t understand me but my carer was clear. Even if it is difficult, I would rather people speak to me , not directly to somebody else about me. I prefer to communicate through my eye gaze computer but with a little patience my speech is intelligible, it is just quite tiring for me. I could not get the district nurse to pause for long enough to direct her to my eye gaze.
K? maintained that I would have been referred to her, to have my balloon water changed weekly, if it was a rig. She told me that my peg only needs changing every month. I repeatedly explained that I have no balloon or peg and attempted to explain the pig tail but she ignored me and spoke over my already weak and desperate voice. She insisted that her eight years experience and three patients with rigs proved that I had a peg. Unable to follow this bizarre line of discussion and increasingly disregarded by the District Nurse, I told her that if she couldn’t follow a fairly simple statement of fact I would not allow her to perform a procedure and asked her to leave.
She evaded my request and continued to tell me that it was a peg and not a rig. I urged her to leave several time, at least ten, becoming progressively more distressed and anxious.
When she finally agreed to leave instead of going she began to make notes. I asked her not to and that I wanted her to leave my house now. She demanded the name and details of my carer. I told her it was none of her business and insisted that she should go. At this point I felt quite panicky. She prevaricated and stood her ground. I moved around the room, trying to catch her eye but she was looking at my carer asking about my bladder. I had to move away as my chest tightened and I began to feel light headed. My speech had become a thin scream as I attempted to shout “go, get out of my house”.
In a surreal moment the District Nurse said “I have to go now. It’s been lovely to meet you”. “No it hasn’t” I growled. She left at around 12.35pm protesting that she “really cares”. (Not enough to actually listen to me though.)
Sunday 12th December 2010
10.30am The same District Nurse turned up at my door. I told her to go away.
Listening to Mike Harding – Napoleon's Retreat From Wigan
Off to watch Merlin!
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