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Sunday, June 3, 2012

Hospital Appt update + Biofeedback Training Update


I had had a stressful day. I had attended two hospital appointments one was a pre-operative assessment in advance of my bladder surgery on 18th June. The nurse, although she meant well, was a real ‘jobs-worth.’ I had helped out as much as possible by writing her a list of all the medications I am on, medications I am allergic to and my ‘special needs’ during surgery – e.g. give me a very good pre-med, ideally admit me to the ward in advance of my surgery. The nurse didn’t appear to know anything at all about Ehlers-Danlos Type III Hypermobility Syndrome and was googling it on the internet. I did (tactfully) try to suggest I explain and then said I did know a little bit having written a book on the topic and being well on my way to a second. This, somehow didn’t do anything to appease her. I asked her about being able to be admitted onto the ward and she said she would email, but was very negative about it and didn’t think she’d be able to help. So much for patient care/requests etc. There were sound reasons for my request, but she just ‘wasn’t getting it.’ There are times when I begin to question the clarity of my own communication!

After this appointment I had an hour to wonder around the streets surrounding this busy central London hospital. I had lunch in an area of benches, half of them with pigeon turd on them. At least it was outside on this gloriously hot day.  I then returned back to a different department of said hospital for a review of my Biofeedback Training. Unfortunately things hadn’t been positive for about the last ten days and I had again resorted to laxatives, where Balti had failed, and had a very sore botty yet again. I said I had resorted to straining and using maximal effort sometimes with very poor outcome. Nurse V said for me to use my bracing technique and to ‘pump’ my waist muscles and then wait a few moments for nature to take its course before trying again. She reminded me not to take large inhalations in advance and to remain slouched and relaxed. She also suggested the use of glycerine suppositories for later on in the day, if I needed to complete my clear out. We rebooked a new appointment for late July and I left full of new resolve to sort out my bowels.

The day ended with a meeting with my publishers about book number two (or three, if I include my poetry book) and it was a long, but very useful meeting. The book is very likely to be restructured, but we will wait until we have all the medical team’s input before doing that.

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