Monday, 9 November 2009

If you're feeling sinister

Sometimes there is nothing to say. Sometimes there is too much to say. Sometimes there is a mix of too much and nothing to say...

On Sunday the 25th of October I took my last prednisolone. It has been 15 days since. This is the longest time I have been off steroids for at least 18 months.

I am not taking any other medication.

Last March my consultant told me I would have to have my colon removed.

I have maintained the hypnotherapy on an (almost) daily basis. I am still trying to get a handle on the NLP techniques, but each time I do it it feels a little better.

In the two weeks since the last pred I have had two stinking colds... or the same one with an 8 day lull in the middle. I don't think these two things are related. Neither do I think I've had swine flu. Naturally illness brings a little negativity into your world, a little anxiety, and (with my track record) a little fear. Yesterday I had a small toilet event. Not too urgent, not prolonged, no abdominal pain, but... loose. At the time I panicked, started to instantly get down, sat on loo for a while, head in hands... But, I went out to get my mind off it. I tried really hard with the NLP yesterday evening. I didn't go again until today. And it wasn't loose.

It's a day at a time. 15 and counting. Whatever is happening, whatever does happen I'm trying to stick to my guns. I still feel good (though plagued by snot) and, despite yesterdays blip, have remained mostly upbeat. I won't stop fighting this thing. I won't give up. I remember why I write here. Apart from sharing my experience to hopefully help someone else. It helps me.


Martin said...

Excellent news. Keep it up. (Not the snotty part).

Jade Sheldon said...

Congratulations on being able to live without having to pop prednisone! I began lowering my dosage but the abdominal pain was just too severe. I truly hope to get to a place with my UC where I no longer have to take meds to keep it at bay.

I understand exactly what you mean about fear. When I experience loose stool or see blood my heart starts to pound and I think, "What does this mean!? What did I do!?." Good job at keeping your head and not letting that fear overwhelm you.

Keep writing: it truly does make a difference not only for you but for all of us.

Thank you...

Rich said...

Thanks Martin - trying not to let my natural laziness scupper things (the snot is beginning to subside too).

Hi Jade - thanks for your kind words and support. I hope you can reach your goal with the meds. If there is any advice I could give it would be to taper the preds VERY slowly - I wrote about the method i used in an earlier post:

As for the 'fear' - I have come to believe that this is very significant, especially the way it consumes us, as you describe. I have been really trying to control this.

Good luck - keep fighting.

Skinny Girl said...

I ditto the comments about fear; I've got it too. Congrats Rich, it sounds like you are making excellent strides. And I especially applaud you on trying to take your mind off it instead of despairing! Way to go!

Rich said...

Hi Skinny

Yeah breaking the 'thinking about it constantly' cycle seems to be really helping.

Paula said...

Hey Rich...glad to hear you going good..keep it up... :D ..

Paula said...
This comment has been removed by the author.