Jiving on Regardless











{May 23, 2008}   Endless thinking

Today has been tiring and quite the chore.  N had the day off and my son had an additional days holiday from school for teacher training.  Here we were planning a lovely family day but our eldest had other ideas.  He decides that today is the day to kick off and behave like a brat and in the process has made the day quite fraught – I love being a parent sometimes!

This morning didn’t start well at all as my colitis was painful and I had a protracted bout of it which meant our day was set back by a few hours.  N and I have been chatting a lot about the ops etc and we concluded that I have no perspective on pain, discomfort and what I ‘should’ feel like.  My pain threshold is now so high that what I class as a 3 N thinks someone else, without chronic illness, would class as an 8/9.  I admit that I persevere despite symptoms as all chronicly ill patients do and I am struggling with how much benefit I would get from having the ops as I can’t imagine how much better and different I would feel as a result of them.  It’s been ten years since I felt ‘normal’.  I also realised that this is the first time in ten years I have been experiencing UC with no medication.

I digress slightly but does anyone else find that their bladder is more sensitive when their UC is in flare up?  Not only am I on the loo constantly for obvious reasons I am now always emptying my bladder – I am so fed up of the decor in my bathroom.

Tomorrow I hope to have a conversation with the lady my stoma nurse recommended I speak to.  The last few days have been full of minor realisations of the impact this process will have on me.  Yesterday I finally read the literature the nurse gave me.  I haven’t read it before as I guess I wasn’t ready for the detail but I finally did it and it made for depressing reading.  For 8-10 weeks I won’t be able to lift anything heavier than a kettle! 8-10 weeks!  This means I won’t be having big cuddles from my little men or bathing my youngest.  I won’t be driving for six weeks, although  am guessing that this is fairly irrelevant as I won’t feel up to driving anywhere anyway.  Supposedly, even the third op, the MINOR op requires a 7-10 day hospital stay! On top of this the risks of complications and set backs seems enormous and all too common.  I am most definitely not in for an easy ride – and that’s annoying!

Despite all of this I know I shall be going ahead with it. My husband is really keen for me to have it done and I guess that says a lot about how much he feels this disease impacts on mine and his/the kids lives.  He can’t stand seeing me in pain (he found childbirth a hugely stressful and traumatic time) and I know he would not encourage me to go through this if he didn’t feel it offered huge benefits.  It still seems mad that to have a normal life I have to go through two years of operations, procedures and enormous change.

I have a feeling that this blog will become an endless repetition of my waffle for the next few weeks, so anyone reading it feel free to tune out for a while 🙂

I am now going to spend the evening with my lovely husband, watching Heroes and eating curry (before you ask, curry makes no difference to my UC) – my definition of happiness 🙂

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