still here, just about

So it's three days before Christmas, I'm in bed, in chronic pain, waiting for my brother to bring my little boy home. I haven't wrapped any presents and Santa had better actually be real or my kids are in trouble; I'm in too much pain at the moment even to crawl down the stairs to put the Christmas tree lights on, though I expect I will make myself.

Things have got to a really dire point for me.

I am in so much daily and nightly pain and discomfort, even on a strong Fentanyl patch and top up Tramadol.

The acupuncture seems to have done very little.

The Elmiron has been given the go ahead, so I should be happy about that, as it was such a big battle, but it's funny how your mind works - I'm now terrified about the side effects.

My consultant thinks my Interstitial Cystitis has got worse and wants to do another cystoscopy later in 2014 once we have given the Elmiron 3 to 6 months - assuming it doesn't destroy my liver / make all my hair fall out in clumps.... If the Elmiron does work, as I know it can from reading other people's stories, well, it would be a miracle.

But miracles don't happen to me.

This Christmas, I'm just worried that my misery and illness is going to ruin the time for everyone else. Everybody around me seems to have reached that point where they are just too exhausted with me to even feel sympathy or compassion anymore. My godfather the other day told me if I were only happier, people would like me more. Ha! Anyone with IC will understand the irony of that one.

So down the stairs I struggle. More soon.