A pile of dirty dishes

I find myself on the brink of yet another flare. For the past month the signs have been steadily building, starting with the crippling joint pain. In the past my joint pain was restricted to my left hip and wrist. This time every bone in my body seems to screaming in agony particularly in my hands. Perhaps it’s because we’ve had so much rain. Perhaps it’s because I’m getting old. Perhaps it’s because the UC is getting worse.Two months ago I started bleeding. I was put on Prenislone. After two days I felt amazing. Bleeding gone. Diarrhea halted. Urgency abated. Appetite back. A week later, I’m in a place I’ve never been. I can’t stand to be around anybody. I am disconnected from my children. I’m having panic attacks and suicidal thoughts. I have steroid induced psychosis. I immediately stop taking the roids, my Dr advises this over weaning as I hadn’t been on them that long. The withdrawal is horrific. I have gained 28lbs in 3 weeks, I am constantly lightheaded, nauseous, depressed, and frightened. It took me a month and a half to recover. A week later, the joint pain started….

I look around my tip of a house and realise I can’t go on like this for much longer. The dishes are piled high in the kitchen. There’s a basket of laundry that needs folding. My children’s bedroom is a mess. My bedroom floor has become my wardrobe. I am not fulfilling my role. Partly through not being able to physically, as I’m exhausted and partly because I am mentally and emotionally drained. It’s like a vicious circle. I know I need to do these jobs, the fear of discomfort stops me from doing anything. I get despondent. Nothing gets done.

So here I am, running to the toilet for the seventh time today, not seeing any blood but knowing it’s only a matter of time. Knowing that I will not take steroids ever again as I can’t put my family or myself through that again, but also knowing that if don’t I’ll end up in hospital again on steroids anyway and possibly with an emergency surgery.

I pray that I “get away with it” this time. That this is just a blip. I’m seeing my GI at the end of June – if I make it that long. He will be letting me know the outcome of a meeting he had with the surgical team about my case, as I discussed the possibility of an elective colectomy at my last appointment. I left that appointment wondering if I had been too hasty, if I should continue down the medical route – better the devil you know and all that. As I sit on the toilet writing this on the iPad I come to the conclusion that I may have reached the end of the road. Perhaps it’s time to let go, give in to the inevitable, have it out and be done with it.