Twelve weeks and two days of life without drugs...
Here I am in a new drugless month, a new drugless year... a new drugless decade? Ha! Lets keep things in perspective. I have, however, had a trip to the gastro-clinic up the RSCH this week - the first since I eschewed the steroids. My last appointment was about 4 months ago, at which I informed them I was not going to embark on the course of infliximab they were encouraging, and was met with rolled eyes... They wished me well, which was nice, and bade me to remember that I had to get off the steroids. So I bloody well did.
Up the stairs I bounded - the deeper into my thirties I get the stronger i find the compulsion to ignore lifts. Why is this? Is it an attempt to prove my remaining youthful vigour? To whom? - to the 9th floor, where resides the 'Digestive Diseases Clinic'. I stroll into the ante-waiting-room, up to the reception desk, with an up-beat step, check in and then survey my fellow digestive-disease-ridden souls. I try to give them all a little mental boost by appearing super-confident and exuding an assurd poise that is supposed to suggest "Hey, i'm in control of my UC - you guys can be too!", but perhaps just makes me look like an arrogant twat. Whatever, most of them just ignore me. Quite rightly. Within minutes I'm through to the waiting-room-proper and on the scales. As before the positivity has zoomed me through this place with a speed that once seemed impossible. Could it be that I will NEVER AGAIN be made to wait for over an hour? Or, indeed, be forgotten completely only to be told that the clinic is closing and the consultants have all gone home (out of some unseen back door)..? The scales read 76Kg (11st 9lbs), weight lost! Under 12 stone! This has got to be the result of not taking steroids. Not being bloated all the time by fluid or air or whatever the fuck those things do to you. And not being plagued by the unquenchible appetite for cakes and biscuits that they bring. Actually that might just be my own appetite, but it seems so much harder to control on the preds. God, I love cake. I'm sitting in my seat feeling good. The other people in there seem weighed down. They hunch. And glance sideways at each other. I feel tall. I used to be like that; cowed by the UC. I loved and hated going to the clinic. A sanctuary of helplessness. But now... I'm just passing through.
The Nurse Practitioner, comes out of her consulting room to grab some notes, glances at the waiting throng, then looks again, at me, and says 'Hello'. They remember me here. They never used to. My appointment is with her. My consultant stopped seeing me after our row about drugs. He only saw me again to tell me I needed a colostomy last spring. But I argued with him again... so, it's the nurse for me. But she is very good. And personable. And then she calls me through.
"Hello Rich. Back to school next week?" (impressive remembering)
"Oh, you sound like you've got a cold?"
"Yep, fourth in 3 months, but, hey, I don't like to complain...". Liar! Liar! How can one man get sooo many damn colds? Still, considering the alternative...
"So, tell me, how are you?"
"Good. Very good actually."
"Oh, great. What meds are you on at the moment?"
"No, I mean the steroids. What dose?"
"None. Zero. Zip. Nada. No steroids."
"Really? Since when?"
"Well! Well done you!"
"And you've done this using the (refers to notes) CBT?"
"Er, yeah, but it's NLP, not CBT."
Which threw me a bit, because in my researching about before I submitted to the strange world of NLP, I found much to suggest the conventional medical world was embracing NLP, slowly, but definitely acknowledging it as beneficial. Not on Level 9 apparently. So I had to explain what I had been doing, and how it had helped. Or more honestly, how I have used it to help myself.
"Well. Well done you." (the repeated use of this phrase, though meant with good intent, started to tickle me)
"Yeah, thanks, the best thing is how much more positive and in-control I feel. And getting off the steroids."
"So, you've been well without them?"
"And how many times are you opening your bowels?" (Medical speak has such a turn of phrase... Like it's a manually achieved situation) "4 or 5 times a day?"
"Er, no... once. Sometimes twice." (Is 4 or 5 times 'normal' for anybody? Surely 4 or 5 times daily would suggest the need for medical intervention? That would be detrimental to ordinary daily life would it not?)
"Once? Oh, well done you." (Thanks. I haven't been congratulated on going to the toilet since I was that proud toddler looking with gratification into his potty.)
Then she threw a curve-ball.
"Would you like to come and talk to other people about what you have been doing?"
"Er..." I said no. Not that I don't want to pass on good practice (as we say in the teaching trade), or do my best to help other people, but it is early days. When I have been several months down the line I will be ready to talk. But at the moment it's still about me.
Incidently, at the hospital, they're tentatively talking 'remission'.
Embrace the Suck
1 month ago