where did normal go?

I’ve been meaning to do a video post, just for kicks, and because hey, why not bring some roguish Kiwi charm to the colitis and literature discussion table?

But that’s not tonight, because I’m suddenly feeling spectacularly sore, and am hour by hour convincing myself that I am getting more and more of a prednisone moon-face. So that’s a blast.

Related, kind of, here’s my current new-drug status…

– Week and a bit on prednisone.
– One and a half days since my first infliximab/Remicade infusion
– Week and a bit on my increased dose of Asacol (4 pills twice a day instead of 3)

 

And the ‘results’? Well, less blood and whatnot. Which is progress. Less frequency, kind of… but I’ve still been taking at least one tramadol most mornings, and just spent quite some time writhing and nearly crying in the bathroom and now am propped up in bed, having taken two tramadol capsules just to try to make the pain go away. I felt exhausted and icky all day yesterday after the infusion, to boot. Fun times.

What does it feel like to have normal insides, I wonder? I really don’t remember. A day has really not gone by in the past couple of years in which I have not either spent a period of time worried about whether I’ll suddenly have issues/where the nearest bathroom is at ALL times – or alternatively, felt two awful/anxious to even leave the house. So that’s fun. There’s a reason why I have meltdowns of a fairly impressive nature once every two or three weeks. Normalcy is gone. My normal is planning a route to work that takes me via several publicly accessible bathrooms first thing in the morning. My normal is constantly worrying that my colleagues could be saying things behind my back while I’m on my fifth bathroom trip of the morning. Looking at my arm and seeing a mottled bruise from an IV that looks like it should belong on the arm of a 80 year old, not a 22 year old. Avoiding going out. Crying in the bathroom. Being woken up by my angry colon at night, not being able to comfortably lie on my left side because too much pressure is put on the ulcerated area. Using up all my sick leave and a fair chunk of my holiday leave for colitis related absences. Not being able to plan trips/travel/anything because a) will I get there in one piece and b) even if I do, how am I going to hold up long term… because the treatment I’m on (that might not even work) is hardly likely to be covered by travel insurance, and each infusion costs more than I have saved right now.

I never wanted to be normal when I was younger. Non-conformist was a buzzword that I seriously subscribed to at fifteen. I’ve been alternative/off-beat/indie – I’m generally weird-ish and I love it – but for once in my life, why, why WHY can’t I just be normal, in this one way?

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