Tuesday, 12 January 2010

What difference does it make?

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)
"Yeah. Sadly."
"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?"
"October 25th"
"Well! Well done you!"
"Ahhh, thanks..."
"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'.


Whittles Wobble said...

Rich, how did you get involved with NLP? Is there a group or seminar you attended? Were you able to talk to your doctor about this stuff?

Rich said...

Hi Whittles. Now, there's a question... I really should post about this - I have pretty much been posting what I've been doing (if you can wade through all the waffle), but feel like I want to monitor my progress for a while before I start making big noises about 'miraculous recoveries' or anything...

Basically it started through blogging. Martin, over on Number Twos was contacted by a chap called Guy Cohen. Martin was pretty cynical to begin with and gave him a pretty good grilling. I was also somewhat doubtful, so sent Martin a bunch of Q's to put to Guy - which he posted on Number Twos. Guy answered my Q's and we also continued a conversation via email. I think Martin and I were both convinced Guy was genuinely trying to help people, and, in my case, as I was getting nowhere fast with conventional meds, I decided I had nothing to lose in giving his methods a go. I cannot possibly explain to you why, or whether it would be the same for any other person, but you can see the results from the last 4 or 5 months posts.

My gastro-clinic has never offered me any advice outside conventional meds. Fair enough. Plenty of people have offered me their opinion on alternatives, like the NLP. Plenty of them have been pretty forthright, if not abusive about it. I feel quite strongly that I just want to report my progress on my blog - it's been such a support to me over the last 2 years. If anyone decides to investigate anything I mention any further then, great, but it's their decision. All I would say about the whole question of any alternatives - as long as you are not forking out massive sums of cash - what have you got to lose?

Guy Cohen has a website that is easy to find on google if you want to check him out.

If you had suggested to me a year ago I would have travelled up this path I would have probably snorted derisively and told you to "F**k off"!

Hope that helps...

Paula said...

you make me laugh...that is such a funny post for UC suffers (especially when we're in the all clear)...flipping Doctors and Nurses have no bloody idea...I think I'd have been waiting for her to pat me on the head like some good little kid. Anyway, I think it's brill that you've got so far. Definatley agree with the NLP...I'm just in the wrong country to get the full on benefits, as I spend most of my days beign stressed about something over here...though sayign that, it is getting easier, but I know what Guy said definitaly does work...I saw that the first week I tried it...I just need a little bit more help to get the UC under control.

The problem with talking to other people that don't follow our blogs is that for some it works and for some, if your not in the right head space, well, it just won't work...you have to believe..and the mind is a powerful thing...

I'm off to the Docs tomorrow, but as soon as I get back to Oz for a little trip in 2 weeks, I'm going to load up with as many meds as I can get my hands on, to pre-empt the French Doc sayign no to what I think I want or need. I'm hoping to me pred free in 6 weeks, but have the other preventives available ....JUST IN CASE. I have no intention of going through another house bond UC summer :D

Rich said...

Hey paula - you are absolutely right, I think, about the success of NLP and other alternative therapies. They should not be done in isolation of conventional medicine and medical support. I have maintained my three monthly check-ins with the gastro-clinic despite my current success. However, it is not helpful when consultants in particular are so disinclined to suggest them.

As for the success rate of NLP, well, I can only speak for my own experience: so far so good. I have always felt that my state of mind played a significant part in my illness, so perhaps this being proved true. You only have to trawl through older posts to see how much of an influence my thinking has had.

Good luck with the drug-run to Oz! Are you taking an empty suitcase? Hope the flight goes well.

Paula said...

I went to see my French dude today and to be honest he's getting better ... I get what I want now! I know we are all different with our UC's and with mine I either have a higher than normal pain threshold or I lack the severity of pain that other get and I think he honestly did not believe me when I said it was really bad and only steriods would get me out of this mess. He does now though and today I was told that it's nearly all clear...flipping relieved or what...just on the count down from the steriods now...

I also told him that I was going home to get all the stuff I'd normally get there and that I'd bring it back to show him. I have no idea why the French system is so far behind and if I even told you what they were giving me why back in July, you'd seriously have to wonder if I was back in the 1970's!

Funny with the empty suitcases...we actually are going to take 2 empty ones to stock up on summer clothes, shoes and trainers. We don't get a UK run until the end of April and it's the end of the summer in Oz so hopefully they'll be some mega sales going on :D

Rich said...

Hey - good luck with the antipodean sales shop! The lenghts we go to for a bargain eh?

Incidently, i too have been warned by the hospital that I have a high threshold for pain, and that I have 'soldiered on' through rather bad symptoms way too long. I guess it depends what you get used to, and how much pain you've been in before. I'm too bloodyminded, that's my problem.