becalmed....

...is what you are when you get the wind taken out of your sails - and I have had the wind taken out of my sails today.
I visit the Haywood hospital rheumatology department regularly so that I can see Sarah (the truly excellent monitoring nurse consultant), who checks how I am getting on with taking methotrexate (mtx) - she reviews my most recent blood test and we have a chat about how I am.
I said I'd been feeling pretty good, and that the mtx must be having a significant effect. She clearly didn't want to dent my positivity, but she sounded several words of caution -

• The improvement in my joints could in part be due to mtx, but the steroid injection I had 6 weeks ago would still be controlling the inflammation (I'd understood that it would have worn off by now, but apparently it remains active for up to ten weeks). It's simply too early to tell if the mtx is being really effective.
• Just because I had virtually no ill-effects from taking mtx last week didn't mean it would always be like that - this week it might be bad again (oh joy!)
• I can't have another steroid injection now, until I've seen the rheumatologist at the end of January. I thought I could, but it turns out that if I do, they won't be able to tell if the mtx is working - it makes sense now they tell me - but even still it comes as a bit of a blow 'cos they've been a bit of a lifeline. If things become unbearable they will bring forward my appointment with the rheumatologist.
• The 15mg/week of mtx will not be increased until I see the rheumatologist - I thought I would be going up to 20mg and then 25mg straightaway, but apparently this is not inevitable. This is in some ways good news, 'cos it is less likely I will feel lousy over Christmas/New Year.
• I must be careful not to overdo things just because I have some good days

I had clearly misunderstood a lot of things about my treatment - or perhaps had placed too positive a gloss on what I had been told? Whatever, I had built up rather too rosy a view of my condition....

I work for an advice agency that very often gives people lots of very complex information about their circumstances and what they need to do. We recognised some years back that often this was too much for even the most able and calm people to take in without misunderstanding, so we nearly always provide written confirmation of our advice, and sometimes also send a follow-up letter.
It seems to me that health professionals and the people they are treating, are in the same position, and that some sort of written confirmation of what has been said would save lots of misunderstanding and potentially, mistakes in treatment.

So today you find me feeling a little deflated, perhaps becalmed, but probably rather more realistic about my current condition.

Wednesday update - as if to confirm what Sarah told me yesterday, my joints today are as bad as they've been in a month, and if I'm truthful with myself they've been getting worse for a few days.... ho-hum