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Cheryl I realise that I am overwhelmed at the moment and I'm trying to be objective about how im feeling but I don't ever seem to get that "time out". For instance I just got out of hospital on Friday and I have to have my Jejeunostomy tube changed for a new one on Wednesday. (Apparently the doc just pulls this one out and threads another one in through the same hole into the small intestine without any anaesthetic or sedation....looking forward to that) This is a necessary appointment that I can't avoid because the sutures holding my current tube in have all pulled through the skin and I'm holding it in with tape, it's also a temporary tube that was meant to be changed to a permanent tube two weeks ago but was delayed because of the infection.
Then I have weekly in home dietitian visits for my enteral feeds, nightly rituals with connection to my feeding pump, fourth hourly tube flushes day and night and on and on and on. today I had the surgeons receptionist try to book an appointment for my stomach surgery as well as the hospitals occupational therapist wanting to make an appointment for a home visit to assess my mobility needs etc. It just doesn't seem to end.
Ill admit to being so down that I haven't given myself my overnight feeds since I've come home from hospital but that was just a short respite from being constantly connected to pumps and I'm restarting the feeds tonight. It WAS bliss to be able to go to the bathroom without hauling a pole with me. Back to reality tonight.
I've decided to cheer myself up with some retail therapy so I've just bought a new iPhone and tomorrow I'm going to buy a new wardrobe of clothes (none of my old clothes fit, they're too big). I hope the cruise goes ahead and I get to wear some of them.
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